Health Care and the Community: Thoughts Presented at a Social Justice Forum

What I'd like to bring to your attention on the topic of health care and the community, is the degree to which persons of low income can be trapped in qualitatively poor health care. Recently this problem entered directly into my life, as I have been diagnosed and treated for advanced skin cancer over the course of the last year. As I came to realize, there is a marked difference between health care and health coverage. At present – while there may be ever wider health coverage (health insurance, say) – we are still a community where quality of care, that is the ability to receive proper medical support and treatment in a timely manner, hinges upon income (or wealth). Your ability to pay more money than I for coverage, means that you are entitled to a greater quality of care than I. 

Yet, there is of course a problem here: Equating health care with a commercial transaction, neglects the fact that quality health care is a requirement of continued human existence, not to mention human flourishing. Quality care is like quality food or clean water: without these you soon perish. It doesn't matter whether you are wealthy.

But when it comes to the fair and equal distribution of quality health care as a resource, our community turns to money. How will we pay for it? is often the first question. Notice in this reflex, that money and self-protection so easily come to mind. How will we pay for it? The impulse here is the same impulse that has us walk past a homeless person with our eyes ahead, and the moral imagination only on oneself: I hope no one sees me ignoring them. When we are insulated by quality health care it is not so hard to fall into a similar kind of thinking: Yes I've heard about the quality crisis, but someone else (the government, say) will fix it; meanwhile I have good quality care.  

Well, in a small effort to stimulate our moral imagination, I'd like to share a bit from my own experiences being trapped in poor quality health care while in the grips of a life threatening illness.

So, three years ago – when I was twenty five, and still covered by my parents high quality health insurance – I noticed a weird mole on my left hand. To make a long story short: while it was ultimately thought benign, some of it's pathological properties were concerning. While skin cancer doesn't run in my family, as a precaution I was asked to see an oncologist and take ct scans for a two year observation period.

Moving forward two years: In May of last year – right after my final ct scan had been all clear – my wife –who was my girlfriend at the time, noticed a lump on my left arm. While I thought it was some kind of a cist which I had experienced before, given my history I went to have it checked out by my primary care doctor a few days later, and he authorized an ultrasound referral for me.

Now, at this moment in time I was a full time graduate student covered by Medi-caid – I qualified for California's Medi-cal program because while I worked part time, I didn't make enough money to be allowed to purchase publicly subsidized insurance (like Obamacare). Nor, of course, was it financially feasible for me to purchase private insurance.

I mention this because bureaucratic delays and high patient volume are well known in Medi-caid clinics, and would indeed be routine during my care. After waiting a few weeks I was informed that the first available appointment was the beginning of September - three months away!

So, September roles around, and the ultrasound looks concerning to the radiologist. A biopsy is performed. The biopsy results take a month to come back, but when they do I'm told that the growth is cancerous. Surgery is prescribed. But there are more delays, such that it was not until late October, almost five months after signaling the alarms with my primary care doctor, that the original tumor, all of my lymph nodes in my left armpit, and a newly developed tumor, are surgically removed.  

As you know, when it comes to cancer the sooner you catch it, the better. Simply given the delays I faced, it is likely that a treatable disease became a chronic or terminal illness. I recently read a study from the Case Western Reserve School of Medicine in Cleveland which indicated that "patients were two and a half times likelier to be diagnosed with late-stage melanoma if they were covered by Medicaid" as opposed to being diagnosed at an earlier stage with private insurance. No doubt delays play an important role in this data.

But unfortunately, diagnostic and scheduling delays are not the only issue. Doctor appointments often took all day: I'd arrive for a 9am appointment and not leave until 3pm or sometimes 6pm. Bear in mind that I'm a full time graduate student working part time during all of this, and when I'd arrive at the clinic, thirty or forty people would also be there waiting, due to overbooking.

More troubling, was that more times than not I would be treated by a medical Fellow I had never met before and knew next to nothing about my case, despite the fact I had been receiving treatment there for months.

The fact that no one was really acting as my doctor, it seems to me, led to a number of absurdities that I experienced with my subsequent treatment after surgery. First, when it came time to receive radiation treatment a few weeks after recuperating from my surgery the short window of time in which radiation is viable was mishandled and I never received it.

The next few absurdities are related. In January of this year – another ct scan showed that the cancer had spread to my liver and lungs. This was a great blow. Looking at the five year survival curves for stage four melanoma, and then realizing you are subject to the same prognosis is nearly unfathomable in your twenties.

As soon as they saw cancer in my liver and lungs, I was put on what's called targeted therapy – drugs designed to slow the growth of cancer. The issue, as I learned later, was that there is a high chance of toxicity when taking targeted therapy in combination with the immunotherapy drug I was also receiving since November. While I fortunately didn't have to learn this first hand, there was nevertheless a 30% chance I could have developed a ruptured colon from receiving both treatments – something I was not informed of at the time. In fact, the two drugs are never prescribed together.

The next absurdity was that my insurance denied me the targeted therapy I just mentioned. On the same day I was told I was stage 4, the head of the oncology department gave me a two week supply of the drugs – which were FDA approved – and wrote me a prescription. These samples ran out while myself, my girlfriend, and my mother battled with the insurance company. In the bureaucratic maze, no one could tell us why the drugs were denied until five weeks later: a different set of targeted therapy drugs that did the same thing were preferred, but they failed to make this clear to the doctors or to myself. 

The last absurdity I will relay, although I could go on, is perhaps the most symbolic of how income inequality determines quality of care:

I shall have to simplify this for time, but a week after I had ran out of the samples of the targeted therapy drugs had an appointment at the oncology clinic. A medical fellow I had never met before saw me, and I explained the battle I was having with the insurance company. I then asked the most obvious question: Might there be any more samples I could have? The fellow said that she was surprised that I was given samples at all: they were generally not given to county patients on Medi-caid, and instead reserved for patients at the fancy university cancer clinic down the street. 

The irony is that previously, when I was on my parents insurance, I had myself been a patient at the fancy university cancer clinic.

Needless to say, I didn't get any more samples. I found myself dying of a disease that was itself preventable if properly treated. I found myself being denied (what I thought was) life saving treatment because I didn't make enough money to be qualitatively insured. 

Anyway, after this absurd and intense period of delays, denials, and bureaucratic nihilism, myself, my girlfriend, and my family decided that we would pay out of pocket to see a melanoma specialist. This ended up being the right path. After extensive reasearch, we lucked into getting a consultation in February with one of the foremost experts of melanoma, and decided that I should be under his care.

But like everyone in my circumstance (except potentially Warren Buffet), I couldn't pay out of pocket for treatment when one months worth of prescriptions would total $10,000's and a standard PET scan cost nearly the same amount.

My way out was that I was in a loving relationship, and so had an additional option denied by most: get married, and assume health insurance together.

So, Leanne and I went and got married first thing on a Monday morning in February so that I would have reasonable insurance and be able to see our current doctor. By March we were covered by Obamacare, affording us the possibility of being treated with the quality of health care necessary to someone of my circumstance.

Now, at a Phase 1 trial clinic, all of my appointments are coordinated professionally, scans can be scheduled at a days notice, and support is granted whenever it is needed – I can essentially call my oncologist or a nurse who knows me and my case anytime.

I would like stress that through all that I have shared, I was the lucky one: I had a team of people researching and making phone calls, I had the privilege of a graduate education, and unlike many of the people I witnessed at the county clinics, speaking English wasn't a challenge to me.

Nevertheless the kind of neglect I experienced and witnessed in our health care system seems to me indicative of an invisible dark side of our community – a dark side that our current administration is a symptom of. It should be alarming to everyone that the dialogue about health care begins with money, esp. when no one would seriously challenge that quality care is a basic necessity (in the league of clean water). If there is a way out of the neglect and entrapment I've spoken of, I would wager that it starts with cultivating in ourselves and especially in our youth, a moral imagination suitable for citizens of a democracy. My experience in public schools growing up was that controversial topics – political, religious, ethical – were off limits for discussion. If we produce citizens incapable of critically discussing such things, we produce citizens who cannot fight the dark side of the community, the side that consumed by the impulse of self-protection, fails to recognize the interconnectedness of all life and our responsibilities to one another.

Manifesto of the Lifestyle Experimenters

After the given materials of life begin to look themselves rather given and circumstantial, a search ensues: a search for fertile grounds, for a way of life that does not hang itself on the merely local, the merely familiar. With eyes toward this search, our hungry gaze looks out over its own history and it's species history. We earnestly sift through personal traumas and gifts, and scavenge the fruits of the intellectual generations. Here, some of us halt in our tracks, solemn, energized by the breadth of the systematic puzzles or the empirical beauties and tragedies of nature. Vitalized, they'll tell stories which back up their settlement: everything points to the solution of this problem, they say; everything follows laws which can be understood if only we would apply the correctly balanced efforts. For instance, one such settler would appraise themselves thus, "I'm lacking in assertion and my life has become a slavery because of this - and so the way out is to cultivate the powers of self-esteem." Or another would appraise that,  "The world would evolve with the advancement of education, with the eradication of this or that social hang-up." With this, a "battleground" has been facilitated. The search has revealed the fertile grounds we sought, has gone beyond the merely local and fertile.
A great majority at least nod at this approach - in fact, I would wager that all do, at minimum, nod at it. Nevertheless, a minority is not ultimately persuaded. They feel that the "battleground" is just another version of the given, the familiar, the circumstantial. Their suspicion is that the values by which the "battlegrounders" gravitate only goes skin deep: the world does not provide them, only human beings do, and only human beings within circumstantial ruts. From our minorities eyes, all values are experiments in lifestyle, can only be experiments in lifestyle. Building a life on a battle ground is fine, but the added qualification that it is the ground is, for this minority, a kind of shortsightedness or immaturity. They say to the premature settlers: "Look, you have forgotten that always and everywhere we humans are winging-it. We are organic, doing what we do with whatsoever equipment we have access to. Your problems are happenstance, your methods happenstance, and your vision happenstance. There are no ultimate, cosmos signifying obligations that demand to be responsibly met. The world issues no clues which are not first inferred and interpreted by us dying animals. Whatever values you participate in are values you have made up, or else they are values you have followed from the example or compulsion of others. Everything undertaken, however, is guesswork; in guesswork lies all the human possibilities. The approach of you, the battlegrounders, to wholeheartedly get behind some problem you deem central, then, is a strategy, particularly a strategy of coping with life. All there is can be summed up thus, unaccountable weirdness and unaccountable longing. Our movements, which follow, can only be experimental attempts to deal with the unaccountable."  

Peer/Friend and thoughts about The Memory of Earth

A warm day. Nice and blue with little, if any, wind. It was pretty awful. You felt dull and drained from a night of drinking with friends. Acquaintances, really. You’d call them friends in normal conversation but not to yourself. They were acquaintances because 1. at bottom you didn’t feel as if you could relate to them and 2. you didn’t sense as though it would be helpful to speak seriously with then to move things toward self-disclosure. They were peers, of course, but again only in normal conversation. To yourself a peer and a friend were nearly the same thing. The terms both implied similarities in lifestyle. For instance, a peer is someone who you can relate to because they share with you a role, a niche, in a society. A peer is someone who is at the same level of development as you and who is likewise endeavoring to move in the same subtle direction. In short to be a peer is to encounter similar problems and confusions. To contrast this, a friend is someone whose disclosure of the path is possible and who finds sharing enjoyable. So a friend is a little more than a peer and a peer is a little more than someone of similar date of birth.

You forget about flourishing sometimes.

Maybe it is lost in a sense of injustice: the conditions seem all wrong, they don’t let you grow, no one around here is of any value, has ever said anything worthy of the effort of speech. This rebellious Margo Roth Spegelman thing.

The curative imaginings: go off and ‘get it’; move in with her and intimately share.

The movement of the tao.

You occasionally grasp this insight that you have had in the past. The insight is: there is only the circumstance, and everything flows from it. From this perspective its perhaps impossible to get angry with oneself and other people because there is no other possibility of movement. Yet it is confusing.

Getting up early may be helpful. The social guilt or shame will not be a variable.

“I felt like is was something being done to me instead of something we were doing together.” (The Memory of Earth by Orson Scott Card, pg 20-21)

Thoughts on The Memory of Earth:

• The conflicts of movements of transitional-adults, the unease of relationships of those beyond who feel themselves being usurped in someway.
• The curative imaginings: go off and ‘get it’; move in with her and intimately share, quiet down, be well, figure out.
• It is necessary to move beyond instinct in order to develop. In fact nature is urging one not to.

Gurdjieff, Longing, and Wondering Thoughts

You are pulled. You long for a complete devotion to the path. You think of reading the S.A. book. Maybe call Michael and resume talking things through.

You speak with your political science teacher, Scarfe, about testing, standardization, educative intentions, and the mood of community college. You like her one on one. You kind of get into this really slow, deliberate façade with her.

You worry about things. Presentations in the weeks to come worry you. You feel also like you don’t have time for what’s meaningful – and for doing things right. You wish you could connect with someone. This girl in your Bio class reminds you of the main character in the French movie “Water Lilies”. You watch the rest of the film on netflix.

Maybe you’ll ride Steve’s bike. Save some money. Have it handy for path things. Maybe you’ll talk to Michael about trajectories. Maybe finish stats in summer and just ‘take off’. You’ve been yearning. Go away to school only when you think paying money to do so is worthy. You don’t want to get stuck owing money for a fucking loan. Stuck, etc.

A Gurdjieff quote recalls a lot of stuff about ‘right movement’:

“I wished to create around myself conditions in which a man would be continually reminded of the sense and aim of his existence by an unavoidable friction between his conscience and the automatic manifestations of his nature.” —G.I. Gurdjieff, ca. 1913

This reminds you of the way out. Eckhart Tolle in a park.

You are angry that school doesn’t provide instruction in self-knowledge. It can then only be an authoritative exercise. This is the bulk of the argument you have against ‘education’.