One Year Later -- A Kidney Transplant Anniversary

May 10, 2011

One year ago at this moment I was waking up in the recovery room after receiving a kidney transplant.   I still can't believe it actually happened.  After all the dialysis and struggle, I received a kidney from an anonymous living donor.  Yes, this is as humbling and amazing as it sounds.  You can read my previous blogs and Don Colburn's Oregonian articles for the full story behind my unique experience.

It's been the fastest moving and most joyful year of my life. I've seen my wife smile for the first time since my kidneys failed. I've met my donor and her family. We've developed a beautiful and unexpected friendship with them. I've had the privilege to leave behind the food and fluid restrictions that come with chronic kidney disease and indulge myself. Oh, the simple pleasures like chicken soup, strawberries, and beer. So much delicious beer. Thank you Portland!

I've had terrific success with my poetry. I won a few contests and was lucky enough to have a poem published in a journal right next to the work of former U.S. Poet Laureate Ted Kooser.  I've also had great professional success. I've taken a new job as the brand manager with a healthcare technology start up founded by Intel and GE called Care Innovations. This allows me to continue my mission to advocate for healthcare reform and new models of care for all of us. Even with all those changes, I've managed to take a vacation for the first time in years. The pictures in this blog are from Maui where Tracey and I ziplined atop the trees and over the canyons. This serves as a pretty good metaphor for my life this year.

Still, I continue to think of those who wait endlessly for transplants and struggle to live a day longer. I brood over the idea that Medicare, which served me well and is so important to our seniors, is under political attack. I lament the widening gap between rich and poor. I ask myself why I can't do more to help. Most regrettably, I find myself returning to old, bad habits, obsessing with work and not communicating often enough with the friends and family I love so much.

Mostly I just feel lucky as hell that I get a chance to keep learning and trying to be a better person. Thank you, Brenda Hanson for this opportunity. I promise to keep zipping above the trees and canyons for as long as I can.

Health Care Bill--The Oregon Whip Count

March 20, 2010 (9:00 p.m.)

Here's the current status of the Oregon members of the U.S. House of representatives for the Health Care Reform Bill--HR4872:

Oregon 1st     David Wu             DEM   YES  http://www.house.gov/wu/
Oregon 2nd    Greg Walden        REP     NO   http://walden.house.gov/
Oregon 3rd     Earl Blumenauer   DEM   YES  http://blumenauer.house.gov/
Oregon 4th     Peter DeFazio       DEM   YES  http://defazio.house.gov/
Oregon 5th     Kurt Schrader       DEM   YES  http://schrader.house.gov/

Rep DeFazio took a dramatic stand and paved the way for Oregon's "Yes" votes by helping drive a last second deal to increase Medicare payments to doctors and hospitals.  In states like Oregon and Washington, Medicare pays 30% less for medical procedures and services than in states like New York or Florida.  This has made it very difficult for doctors to accept new Medicare patients and has been responsible for clinics and hospital closures in rural areas.  A number of states have been stuck with unfairly low payments based on a geographic formula in use since the Medicare was enacted in 1966.  The provision to increase payments and put in place new geographic reimbursement guidelines was in the original House bill, but not the Senate bill.   However, thanks to DeFazio it's back in.  You can read more details on the negotiations here: http://www.oregonlive.com/politics/index.ssf/2010/03/medicare_deal_reached_clearing.html

This is a good and necessary change.  Doctors in Oregon are cheering.  The only person who's not cheering is Representative Walden, a Republican, who is following the straight party line.  He's a strong "No" on health care and has been screaming "unfair" on "deem and pass" until he turned blue in the face.  Well, he's going to get his wish.  It was announced late today there will be a "up and down" vote on the bill.  This means that Nancy Pelosi and the White House are confident they have the votes.  Let's hope that they do. 

It's going to be an interesting next few days.  I believe there are fireworks to come because the Republicans have shifted into an insanely irrational gear.  I wish I could figure out how to explain to my conservative friends that health care is not welfare. They believe health care reform will be the end of democracy as we know it.  For the life of me, I can't figure out why.  This is one of the most pro business, capitalist reforms in history.  There is no rational reason for this fear.  True reform would have been to move to a single payer system, Medicare for everyone, or forcing all the health insurance companies to become not for profit organizations.  That's what needs to happen for true reform.  The Republicans should be cheering. They won and the American people lost.

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

Mormons and Healthcare Reform

November 13, 2009

I had a very interesting conversation with my mother this week about healthcare reform. My mother retired from nursing a couple of years ago with forty years of hard won experience. She's literally seen it all. I'm a lucky man because my mother dropped everything to been there for me for all my surgeries and was a huge support when I experienced kidney failure. In fact, she was the first in line to ask to be evaluated as a donor.


So, I was extremely surprised when in the first few seconds of a conversation about healthcare reform, she started reciting word-for-word the conservative "talking points" against reform. Socialism, choice of doctors, rationing of care, wait times, the boogeyman of government controlled healthcare...you know the list. It was as if the spirit of Hannity and Beck poured directly out of her mouth.

As a bit of background, my mother is a true believing Mormon and lives in Salt Lake City. Mormons are notoriously conservative and have a powerful distrust of the government due to historical experiences from the nineteenth century. However, they've been progressive about healthcare in the past. The Mormon church was one of the first to extend healthcare benefits to the children of its employees to up 26 years of age. This policy is considered very progressive and has been included in the healthcare reform bills supported by the Obama administration. My mother's reaction seemed antithetical to the stories I heard all my life from her nursing career and the general charitable tenets usually espoused by the Mormon Church.

I was determined to understand this better and decided to do some research. I found the graph you seen on the left on Patchwork Nation (click the graph to go to the site). Patchwork Nation is a blog from the Christian Science Monitor that seeks to use demographic and survey data to break the country down beyond Red and Blue states. It shows how different majority populations around the U.S. perceive policy and social issues. It's a very interesting site.

The graph shows that areas of the country dominated by Mormons are the most skeptical of health care reform, by a huge margin. The site offers some explanations that you can read for yourself and mentions that survey sample size could be a problem.

Unfortunately, my mother isn't the only person from Salt Lake City to play back the Fox News lies and fear-mongering about healthcare reform. I have several friends from SLC who also repeated these same beliefs, including the ones that are outrageous lies (death panels etc.). What kind of echo chamber are the folks in Utah experiencing to get such rabid repetition? It's like they're reading from a single script. Can anyone help me understand this?

I'd just urge anyone who has concerns about healthcare reform and the reform bills to go to read factcheck.org. It's non-partisan. It debunks many of the irrational and nonsensical claims made by both conservatives AND liberals. Yes, there are distortions coming from the Democrats, too. This site focuses on the facts. Luckily for all of us, the facts support reform.

P.S.

Oh and hey Mom, did you see that AARP endorsed the House bill for healthcare reform? Also, did you know your son will depend upon government-provided Medicare to cover the costs of my kidney transplant and anti-rejection medication? Oh and Mom, did I tell you that because of Medicare, my mother-in-law got to choose her doctor for her cataract surgery? This meant she could come from to California to Oregon for the procedure, so that family could help her during her recovery. How's that for portability? Maybe you could give healthcare reform another look?

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.

Neutral Analysis of Obama's Health Care Reform

September 15, 2009

People do care about health care reform! I've heard from many of you over the past week. One of the best emails I received is from Robert Vizza a brilliant marketing strategist and former work colleague. He's sent the following note:

I hope this email finds you well, enjoying the remainder of summer. I had the week off and decided to spend a few days looking at the health care reform issue because 1) I was fed up not knowing what was going on with such an important topic, 2) I was fed up with all of the sensationalist sound bites coming from both camps, and 3) I figured that you might be in a similar situation. By no means did I “complete” the analysis, but I do feel like I gathered some good information and have come away with an educated opinion on the topic. At the risk of offending all of my friends, I humbly submit my analysis to you with the hopes that you become more aware of the issue and, selfishly, educate me where I may have missed the point.

Enjoy,
Robert

While I'm sad that Robert spent some of his hard earned vacation time on writing a health care analysis, I'm happy to benefit from his hard work. Click the link below for a .pdf an easy-to-read analysis of some of the proposed reforms. "Boring?" Not at all. Robert is an excellent writer and he includes many interesting facts that you may not know. For a ten minute investment of your time, you can cut through the media and political rhetoric, and be better informed. My sincere thanks to Robert.

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.