Showing posts with label ERSD. Show all posts
Showing posts with label ERSD. Show all posts

Tuesday, September 8, 2009

Silence = Death


September 8, 2009

It's diabolical, really. The people who most need healthcare reform are the least able to lobby for it. If you’ve been following my blog, it’s no secret that I have kidney failure. I work fulltime in order to have health insurance to pay for dialysis and, hopefully one day, a kidney transplant. You may have noted this is my first blog in several months. Why? For the same reason I have not paid my way in the healthcare reform debate; I have a limited bank of energy and truthfully, I’m overdrawn.

Speaking of “overdrawn,” please allow me to use a personal example of the absurdity of our current system. My dialysis provider charges my insurance $10,000 a week, or $520,000 a year for my treatments. For the exact same services, my dialysis provider charges a Medicare patient around $1,000 dollars a week, or $52,000 a year.

Did I lose you yet? That’s $520,000 versus $52,000 a year for the exact same services. Ten to freaking one? How can this be? In what universe does this make any sense?

What’s happening here is that the dialysis company doesn’t make profit from Medicare patients. They break even. Therefore, the 10x from my insurance company provides the profit and subsidizes the Medicare patients. Sound absurd? Why would my health insurance company tolerate this? They tolerate this because at the end of a 30 month “coordination period” they get to turf me to Medicare. With the average transplant waiting list time up to 5-7 years and transplant costs averaging $250,000, thirty months of being overcharged is almost equitable. See http://www.transplantliving.org/beforethetransplant/finance/costs.aspx.

Folks, this is how the system distributes the pain of critically ill people. They call this “cost shifting” and this is just one of a thousand examples that reveal the house of cards used to construct our health care system. Cost shifting hides the true cost of illness, creates billing hot potatoes, and, last of all, it still fails the uninsured, the poor, and the unlucky. What’s worse is that cost shifting causes insurance companies, doctors, pharmacies, etc to raise premiums, prices and service fees. The truth is you pay for Medicare and the uninsured regardless of what you think. The money hides as fat in your premiums and payments. Pundits and industry wonks constantly debate cost shifting and its relation to Medicare. Some companies who have figured out how to work the system to their advantage have hired economists to bust the myth of cost shifting or discount it as a very small problem. Here’s my one word response: bullshit. Cost-shifting is real and pervasive.

You may have missed a tidbit from my true-to-life example above. Yes, I am 42 and am on Medicare. Does this surprise you? In 1972, the Social Security Act extended Medicare to anyone with End Stage Renal Disease as long as they paid into the Social Security system. A public option does exist today. You just need to be a special case to get it before you are 65. Truthfully, isn’t everyone a special case? Legally, aren’t we all of equal value? A lackey from my dialysis center actively discouraged me from signing up for Medicare early. She said “the company” wouldn’t like it. I’m sure they wouldn’t - they’re like all other companies whose sole purpose is to maximize profits and return dividends to investors.

Why shouldn’t you have the opportunity to choose the public option? The public option seems to be very good at setting price ceilings and eliminating excessive profits. It incentivizes efficiency. Let me be clear, profit can be a good thing that spurs innovation. However, it needs to be above board and visible. Why do we allow medical finance to hide behind all these twists and turns?

Matt Tiabbi of Rolling Stone has an excellent article on the whole health care reform disaster, at http://www.rollingstone.com/politics/story/29988909/sick_and_wrong/1. He brings up the point that America has 1300 different insurance companies all with different billing procedures and policies. They estimate a single-payer system would eliminate 350 billion dollars of needless overhead. This is more than enough money to pay for healthcare reform.
Why are we allowing the House, Senate and President Obama to take the single-payer system and the public option off the table? There will be no true reform without both. You know and I know it. The time for silence is over. It’s time for the sick to rise up and speak before it’s too late.


Tuesday, December 16, 2008

Personal Archeology

December 16th, 2008

I've been doing some excavation. I've been digging into my old works. Why would I do this? I can safely identify a couple of reasons. One: pure morbid curiosity. I've been writing since I was fourteen. I wanted to see if I could discern the original spark of talent that I was so convinced I had. Two: I wondered what it was like for me before I knew I had kidney disease. Was I a less serious person? Was I blissfully happy? I was diagnosed with kidney disease in 1986 at the age of nineteen. So, I had about a five year window when I was writing to see what my life was like before.

So what did I learn? It's complicated. I learned the Jon of twenty-five years ago is an absolute stranger. I have memories like anyone else, but they seem to be from someone else's life. I know that sounds odd, but I am convinced I wouldn't recognize my teen self on the street. As for this idea I may have been "happier" when I was younger or before I knew I had kidney disease, that didn't turn out to be true. Not at all. Look at the poem on the right. It is a fairly straightforward poem that chronicles what it's like to be in the process of growing up. In my case, way up. The language choices in the poem reveal that my internal processes were not without a flare of adolescent ennui and drama.

While this younger Jon may feel like a stranger, we have more in common than I thought. We both have a flair for the dramatic. We both write to help ourselves unscramble our feelings. We both feel like we are "in progress" and growing. Today, I am in the middle of this end stage renal disease to transplant journey. My pain is mostly physical rather than emotional. However the situation has given me the opportunity to imagine, much like when I was younger, what my life will be like "after." I feel much like I did when I was younger that I have the unique opportunity to invent myself (or in reality re-invent myself). I feel there are new possibilities ahead. I feel my life has untapped potential. However, there is one significant difference between me and my younger self. Thoughts of the future and what I might become made the young Jon quite anxious. Most surprisingly, today, I am hopeful.

I've posted a couple older pieces of work on my website http://www.joneseaman.com/. "Inheritance" is a poem and "Absolute Zero" is a short story. I wrote both over twenty years ago. I think these pieces show where I came from and how far I've travelled. Perhaps they even reveal that raw spark of mythical talent as well.

Monday, November 10, 2008

Poetry and the Battle Against Cognitive Decline

11/10/2008

This is a risky thing to admit in a blog, but I am experiencing cognitive decline. Sounds melodramatic doesn't it? Unfortunately, this is one of the well-known side effects of chronic kidney disease and dialysis. I have to be honest. I am experiencing this daily. For example, I have found that my ability to concentrate has diminished. My memory is no longer as crisp as a cold Fuji apple. Sometimes specific words I am looking for vanish in a curl of vapor just before materializing on the tip of my tongue. The worst and most frustrating aspect is that my ability to make connections quickly is gone.

Think of it like this; imagine you are an excellent jazz pianist. You have internalized the music and instrument. When you play the music just flows from your fingertips. You easily touch ether without the burden of consciously calculating every note Now imagine you are forced to play with ski gloves. Not only would it blunt your speed and technique, but you would have to rethink nearly every single aspect of how you play.

That is how I feel. Often time for me poems would "appear," translate themselves from the invisible and appear on the page in just a few minutes. Now I find that a similar poem takes four or five hours to make its way to the page. In addition, when it arrives, it does not just need a little polish, everything is askew. It is not as if I missed a button on my shirt. It is more like the buttons are too large for the holes. It's damn defective. The meters all fucked up, god-awful cliches stare at me, and somehow the central threads of emotion are unraveled. This makes me unbelievably angry. Often times in the revisions poems take a much darker tone than I originally intended. I know this is not unique. I think back on other artists who have experience illness. It manifests itself in the work. How could it not?

What keeps me going? Pure stubbornness mixed with shot glass full of hope. I write poetry despite the frustrations because I simply must. What helps me play through the ski gloves is the fact that with a kidney transplant my cognitive ability could return. There is hope. Check it out.

http://www.transplantliving.org/community/news.aspx?id=1171