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.