Organ Donation No Longer a "Pre-Existing Condition"

March 26, 2010

There is a horrible little secret in the organ donation world.   Insurance companies often punish living donors.  What?!  That's right they deemed organ donation a "pre-existing" condition.  What makes me queasy is that on one hand the transplant's recipient insurance company would pay the all the donor's hospital expenses and even travel costs.  On the other hand, the donor is screwed for their charitable act by their own insurance company or when applying for a new policy.

The true idiocy of this insurance practice is that only the healthiest people are ever allowed to donate.  Studies of living donors show it is very rare to experience any long-term adverse affects.  Some good news folks, the "pre-existing conditions" provision in the new health care reform law stops this practice.   

There's another great benefit.  The new law eliminates annual and lifetime service caps.  This helps folks with lifelong disabilities, chronic illnesses like kidney disease and cancer and people who experience any catastrophic health condition.  This will save hundreds of thousands of people from bankruptcy and despair.

There's one critical area of Medicare that heath care reform did not address concerning organ donation.  Medicare covers organ transplants, but only covers anti-rejection medications for 36 months.   Most transplanted organs last over ten years.  Anti-rejections meds run over a thousand dollars a month.  This puts the poor and people on fixed incomes in a horrible situation.  The ability to pay for anti-rejection medications can disqualify a person from ever getting a transplant. They get stuck on dialysis which is much more expensive in the long term than a transplant and medication.   It doesn't make much sense, does it?  There's was a great story in the Oregonian about a young mother in this very situation.  Click the link below to see the creative way her friends are helping her overcome this issue.  Hint: it involves wine.  Unfortunately, it's not an idea that scales to help everyone, but it is what we should expect until the issue is addressed.  That said, it has been a good week for change we can believe in.
http://blog.oregonlive.com/nwheadlines/2010/03/todays_headlines_wine-for-kidn.html

Open Letter to Senator Ron Wyden

December 17, 2009 --



Senator Wyden,

I voted for you and I'm very proud of your record and tireless work to reform healthcare insurance for all Americans. You are the real deal.

I urge you not to accept or support the Senate's healthcare bill in its current form.

Without offering an alternative to "for profit" health insurance the bill will fail Oregonians and all Americans. Available statistics show that "For Profit" health insurance is strangling the life out of our country. The reforms proposed in the Senate's bill will help, but without a "not for profit" healthcare alternative they will fall short. At every turn the "for profit" healthcare insurance industry chooses profit over people. Isn’t this antithetical to our American values? The Constitution of the United States begins “We the People…” not “We the Shareholders.”

Senator Wyden, I know firsthand what it is like to be held hostage by the healthcare insurance industry. As a 42 year old dialysis patient and kidney transplant candidate, I live with the financial burdens and pressures of managing a chronic illness through all the perils of our healthcare system. Daily life requires an extraordinary force of will. In fact, I am one of the only 23% of those with kidney failure who works full time in order to maintain my health insurance and get a second chance at life. However, through all my difficulties, I am not the person in need here.

The uninsured, uninsurable and the under-insured need your continued help.

Most of us have moved beyond hoping for a single-payer, non-profit system. However, expanding Medicare to cover more Americans is a brilliant idea. As a person with kidney failure, I am fortunate because I am allowed to enroll in Medicare. Because I work, Medicare is my secondary insurance and serves as a critical fallback that saves my family from desperation and poverty. Though the Medicare system is not perfect, it is superior to any proposed alternatives.

It just makes sense good to build on the Medicare infrastructure that is in place and works today. I urge you not to compromise on this key reform.

I also do what I can to help by advocating for healthcare reform with my blog. You can see this letter to you posted there (http://www.joneseaman.blogspot.com/). Of course my blog has a special focus on kidney disease, dialysis, and organ transplants. I sincerely hope that you are a registered donor and that I can continue to laud your achievements on my blog and support your reelection.

I greatly appreciate your service to Oregon and the United States of America.

Sincerely,
Jon E. Seaman

Jon Must Have Been High

December 9, 2009 --

The first year after I graduated college was brutal. The George Bush Sr. recession of the early 90s withered the economy. It wasn't a happy time for young people. If you don't remember what it was like, just think of the angry grunge music that replaced pop music and glam rock. Jobs for graduates were scarce. I felt like everything I'd been promised my whole life (work hard + college degree = good job) was a farce. Between acting gigs and contemplating grad school, I accumulated substantial debt and looked for a real job. To scrape by, I worked as a bouncer, a substitute teacher, a sheet rocker and and jewelery salesman. None of these jobs offered health insurance. I remember I thought I could get by for bit without it. I suffered from the same delusion of invincibility as today's 20 somethings. This is despite an early diagnosis of kidney disease I received in college (when I had insurance). I felt like I was on top of it with inexpensive high-blood pressure meds.

Then I blew out my knee playing basketball. It swelled as large as a truck tire and I couldn't walk. I had no money or insurance, so I delayed treatment and hoped it would just go away. No luck. After a week I dragged myself to the emergency room. For a $1000 bucks, money I didn't have and that added to my debt, they X-rayed me, drained the knee, and injected it with cortisone. I had a medial collateral ligament tear and needed surgery. The doctor recommended I see a specialist and a surgeon. When I explained I didn't have health insurance, he shrugged and gave me some steroids to keep the inflammation down and said, "good luck."

I did not get the surgery. Once I did get health insurance several years later I ended up going to rehab three separate times because my knee didn't heal correctly. Go figure. A few years ago I got an MRI that showed as a result for not getting proper treatment, I have degenerative arthritis in my knee. To this day I have a slight limp and chronic pain.

Moral of my story?

• Jon is stupid and was probably high
• Being poor and in debt sucks
• Working temp, part-time work, or for small biz usually means no insurance
• 20 somethings don't understand the need for health insurance
• Ignoring an injury or medical condition leads to life-long problems and lower quality of life

Often we think of the uninsured as chronically ill people who are refused coverage. This is only part of the story. If you want all the facts please visit, http://www.covertheuninsured.org/. It's a detailed site that uses non-partisan studies from the Robert Wood-Johnson foundation to give you the straight dope. It's worth a scan. Know the facts. One thing that drives me crazy is the assumption that people who don't have health insurance are lazy welfare seekers. Not true, see below.

As the senate does it's back-room deals, don't let them forget about young people. If they extend Medicare and compromise on other alternatives to for-profit health care insurance, they must not do it with their normal superficial ass covering. We need real solutions to help all uninsured people.

Names of the Dead

November 6, 2009

If you haven't heard, there's a huge vote in the next few days on the Healthcare Bill before the House of Representatives. The voting will likely follow strict party affiliation. Most Democrats will vote "Yea" while ALL Republicans will vote "Nay." When it comes to healthcare, my affiliation is very clear. I belong to the Human party.

What is the heck is the "Human" party? Quite simply: I choose people over political parties. I choose the rights of people over the rights of corporations. I choose to support the disadvantaged and the handicapped so that they will be able to help themselves. I choose to support healthcare as a basic human right and believe that healthcare for all is the new hallmark of truly great civilizations. Why? Because I know that every human being that has ever lived and lives now will grow sick or suffer injury and die. The only variation in that equation is length of suffering. This is the one experience we all share regardless of century, sex, race, religion, nationality and politics.

I support this bill. I know it is not perfect. I know that many of the proposed changes will not satisfy anyone due to cost, coverage and ideological beliefs. This includes my own belief that the only logical solution to healthcare is a single payer system. I support this bill because it is a start. We desperately need a start here in America. As the most advanced civilizations around the world have proved, universal healthcare does not cause the fabric of the universe to unravel, turn the people into slaves or make them fascism victims. Universal healthcare simply improves the quality of the lives of everyone, not just the rich or fortunate.

I think the seriousness of the issue is best shown on the site namesofthedead.com. Democratic House Member Alan Grayson sponsors it. The site gives voice to those people who have perished because of no health care insurance. You might not care for the politics behind the site, but the data comes from a study by authors from the Department of Medicine at the Cambridge Health Alliance, affiliated with Harvard Medical School. Click here to read a .pdf of the report for yourself. The conclusion: Every year 44,000 people die because of lack of health insurance. That's more than from kidney disease (42,000+), the root of my own advocacy. A just released John's Hopkins study shows that a lack of health care and insurance contributed to the deaths of 17,000 hospitalized children in the last 18 years.

More people die from lack of health care insurance every day than from automobile accidents and homicides combined. The consequences here are very real and demand we take action, imperfect or not, to make immediate improvements to our barbaric system.

I know most of you already have health insurance. However, instead of considering this a numerical or anonymous issue that doesn't affect you, I encourage you to spend five minutes to read some of the stories on namesofthedead.com. It will help you understand the true costs beyond dollars and statistics.

I was shocked to find the name and story of Theron Read from Salt Lake City. Theron was 44 when he died on a light rail train from a heart attack in late July. He, like me, was an actor and a poet. Theron had a pre-existing heart condition and worked for a small business that did not offer health insurance. He, unlike me, did not qualify for Medicare. Why kidney failure is covered and heart conditions are not points to the ludicrous labyrinth of the system. Theron made very little money and could not qualify for nor afford health insurance. He did not have the money to cover the costs of managing his chronic illness or pay for needed medications. He did the best he could with what he had and died needlessly before his time.

I knew Theron. We traveled the same circles and even did a show together in the 80's. He was gentle and kind, quirky and funny. Regardless of economic circumstances, Theron’s family, friends, and the larger community of writers, actors, and musicians in Salt Lake City loved and valued him. I am very sad to hear of his passing and the circumstances behind it.

My friends, healthcare reform is very real check on your morals and values. What do you believe and stand for? Have you thought about it? I have. I believe in humanity. I believe in optimism rather than pessimism, hope rather than despair, learning in place of dogma, truth over ignorance, tolerance in place of fear, and compassion over selfishness. I believe in the fullest realization of the best and noblest that we are capable of as human beings (thank you, Paul Kurtz). I condemn violence, the "I got mine so fuck you" crowd, and greed without purpose.

Please contact your local Representatives and Senators. Ask them to vote for healthcare reform. They won't do it, if you don't demand it.

Frightened into Submission, Terrorizing America

September 11, 2009

Thanks for all your thoughtful responses to my last blog. Carri Bugbee replied, "...It makes me wonder, yet again, if those screaming against change are primarily the uneducated and easily duped. This wouldn't be the first time that politicians have convinced people to campaign against their own best interests."

I wonder the same thing. How have people become so terribly misinformed on healthcare? The insanity and paranoia that poured forth in the town hall meetings astonished me. Look at a few basic facts prompting the need for change:

• Over 40 million uninsured
• Healthcare costs are the number 1 cause of bankruptcy in the US
• Healthcare is 17.6% of our GDP -double that of the top 18 industrialized countries
• The World Health Organization ranks the US 37th in healthcare and 24th in total life expectancy
• According to the UN, the US is 33rd in infant mortality and our own CIA fact book actually ranks us lower, an astonishing 46th

America's system by any objective standard is an embarrassment. It seems like people just aren't paying attention. Even the "I've got mine, so screw you" crowd has to admit that this problem is rapidly eroding the basic fabric of our society.

One friend wrote me that in the past two years his health insurance premiums shot up to be 30% more than his home mortgage payment. Indeed, heath care premiums are rising much faster than wages. That is unsustainable.

Why then are people acting against reform, against their own self-interest? Perhaps they haven't had the misfortune of a catastrophic health event and don't have the foresight that it will happen to them. The brutal truth is that everyone gets sick and dies. Despite what Aubrey De Gray says, our generation will not solve "the death problem" and become immortal.

What is happening here is that people who are making healthy profits (so to speak) and have investment in our current system spend $1.4 Million dollars a day to scare the shit out you. I'm not making this up. This is according to the Washington Post http://voices.washingtonpost.com/health-care-reform/2009/07/health_care_continues_its_inte.html. There health industry has created "war rooms" where their best and brightest marketers figure out how to label issues and turn the conversation completely back on itself. Sound absurd? Have you heard any of the following in the past month:

"Death Panels," rationed care, "socialism," government take-over of healthcare, long waiting times for services, can't choose your own doctor, you will lose your current insurance, illegal immigrants will get free healthcare...and so on.

Some of these are legitimate concerns that the reform plans must address. However, civilized conversations are scarce. The tone of the dialog is from those who are against reform boils down to, "The government and our president are liars who want to control your life and turn the US into Nazi Germany." This is utter garbage meant only for one purpose, to get you and those who have the slightest distrust of government to be afraid and act against their self-interest. It is a form of political terrorism.

The only way that you can avoid becoming a victim is to take responsibility to educate yourself on the issues. Healthcare reform is the most critical issue of our lifetimes. Knowledge is power. We fear what we don't know or understand. Don't be a victim, read, ask questions, raise your voice, and demand change that's best for you.

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.

Bad Post

February 10, 2009

So, it's been a few weeks since I blogged. I apologize for my absence. My goal to blog twice a week has turned into once a week. Unfortunately, I haven't even kept that commitment. I've been focused on work and retaining my job in this ludicrously harsh economy. You see, the salary is nice and necessary but the health insurance is essential. Without health insurance, I would be completely broke within a few months.

Let me dimensionalize this for you. Life sustaining dialysis costs over $10K a week and in the past year, I've rolled up about $800K in medical costs when you include surgeries and hospitalizations. Most dialysis patients average two hospitalizations every year. So, this is pretty common for my situation and for the foreseeable future. When you routinely rip open bills that have a $60K bottom line that say "not covered," well...you shit yourself. Then you spend hours on the phone with your insurance company who routinely tests your mettle and will to live with a ticker tape parade's worth of bureaucratic paperwork. It's a freaking part time job keeping them paying, getting approval for meds, etc.

Here's the secret. Insurance companies don't make it easy for you, not because they're grossly incompetent, as is the widely held view. No, it is because they would prefer that you die. At a minimum, they want you to give up trying to get them to reimburse. At best, they want to pass the expense along to someone else, preferably the government, your employer, the doctor, the medical facility, and especially you. Why aren't health insurance companies more efficient? Because there is no monetary incentive in it. There's no profit in streamlining the process. Make no mistake, the vast majority of health insurance companies are profitable.

Why do I tell you this? Why tell you that I'm working for the health insurance, how I'd be completely screwed without it, and then bash it like an electronics store window in a riot? It's simple; the system is broken and must change to benefit ALL of us. I don't like being a drain on the medical system and the economy, but I know something you most likely don't. It's only a matter of time and circumstance before you end up in my shoes, or worse, in some uninsured person's shoes. It's a part of the human condition, living a mortal life. Despite what you tell yourself, you will grow old (if you’re lucky), suffer an unspecified amount and die. It's all much closer than you think.

I urge you to hold President Obama and your local senators and representatives accountable for their campaign promises. The medical system must change. Your life and dignity depend on it.