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.

Can you believe it? Sotomayor has Diabetes!

May 28, 2009


The standard confirmation process for a Supreme Court nominee is a spectacle akin to the original Scopes trial. Countless political blowhards line up to testify, grandstand and pound their cymbals (and symbols) together like mechanical monkeys. They ask leading questions designed to force nominees to take nation polarizing stands on abortion, gun control, freedom of speech...you name it. Every topic is fair game for inquisition and speculation.

That brings me to Judge Sotomayor's diabetes. Much to my surprise, it isn't the standard political pundits or right wing opposition bringing up her type 1 diabetes. Nope, it's the media. Just Google "Sotomayor Diabetes" and you'll pull breathless reporting from media giants - Time: "Sotomayor Diabetes: Will it be a handicap?" , the Wall Street Journal: "Should Sotomayor’s Diabetes Be Considered In the Nomination Process?" and the Associated Press: "Sotomayor's diabetes helps shape views on discrimination". I could go on for 150 Google search page results. It's ridiculous, but it's also reality. Ignorance creates fear and even better headlines. The AP reports:

"Diabetes renders the 54-year-old Sotomayor more susceptible to heart disease, blindness, nerve damage and kidney damage. An estimated 23 million Americans — 8 percent of the population — have diabetes, according to the American Diabetes Association."

Gasp! How terrible. Can she really be considered for the Supreme Court? How could it be? Is the Obama administration insane? Ready to puke yet? I am.

The good news? Sotomayor and the Obama camp addressed the issue head on. They also went a step beyond and used the issue to help educate the public on basic diabetes information. That's amazing and thoughtful. The Huffington Post has the substance of her press release, "Sotomayor's Doctor Says her Diabetes is a Non-Issue." CNN's headline really cracked me up, "Sotomayor's Diabetes: She Overcomes it Every Day." Well, of course she does. It's a chronic illness, for hell's sake. The AP article is at least smart enough to point out:

"If the Senate confirms Sotomayor, she won't be the only Supreme Court justice to cope with a significant health condition. Chief Justice John G. Roberts has suffered seizures. Justice Ruth Bader Ginsburg has survived bouts of colon and pancreatic cancer. Justice John Paul Stevens, who's 89, underwent radiation therapy for prostate cancer in 1992."

Again, welcome to life, the ultimate process of dying. So what's my angle on all this? I'm freaking delighted. No sarcasm intended. We need people in positions of power that represent more than fake political ideals. Sotomayor has a chronic illness that she's proactively managed with insulin injections and diet since she was eight years old. Hallelujah, a success story! I see the results of poorly managed diabetes in my dialysis clinic three times a week. I can tell you without reservation that Sotomayor is a real role model.

Will her experience with a chronic illness affect her judicial temperament and philosophy? I sure hope so. She's more likely to understand the issues, rights, and laws concerning health care. She's more likely to have a humane perspective. That's not guaranteed of course, but she'll at least have hard won experience. Health care, disability, discrimination, and privacy won't be esoteric legal exercises. Folks, if you haven't figured it out yet, health care is the number one issue of the twenty-first century.

Why Natalie Cole Sucks!

April 3, 2009


Natalie Cole was on Larry King Live this week discussing her kidney failure and pitching the general public for an organ donation. I was very eager to hear what she had to say. As you know, celebrities can help raise public awareness and build understanding for important social issues. Michael J. Fox has done a superior job for Parkinson's. Lance Armstrong has done an amazing job for Cancer. Natalie had a rare and important opportunity on LKL. Unfortunately, she blew it.

My expectations for the interview were fairly modest; educate folks about kidney disease and explain the need for organ donors. Instead, what we saw was a very narrow personal perspective, a misrepresentation of many facts, and a minimization of the struggle people face on a daily basis when in kidney failure. Here's a little snippet. There's more of the interview in associated clips.



Statements that pissed me off:

• "If I don't get a kidney, I will be fine." WRONG. Dialysis patients live an average of 7 years. Dialysis patients 60+ years live 4 years. She's 59, BTW. Also, 20% of dialysis patients die every year. Dialysis patients are hospitalized an average of twice a year. Dialysis patients are at risk of heart disease, bone disease, anemia, neurological disorders, infection, blood clots etc. Through the interview, she downplays the difficulties of dialysis and ignores the very real risks.


• "Dialysis interrupts your life, but other than that...You read, you eat, watch TV, and nap."" Oh yeah, what a party. It's one of the biggest myths. People think we bound from the dialysis chair feeling like Superman. BULLSHIT. I've seen people puke, get vicious cramps, pass out, scream in pain, code (go into cardiac arrest), and get carted off in an ambulance. I've seen a senile old lady pull the needles from her arm and spurt blood all over the floor. She could have bled out. Fun for everyone. You are stuck in a chair and cannot move for four hours. Most people can only watch t.v. because their brain completely fogs out. The people I see look like zombies, not like vacationing debutantes. BTW, food is forbidden at my clinic because they're worried we could choke to death.


• "Dialysis takes 3 hours and 15 minutes." FOR HER. The time spent on the dialysis machine varies based on remaining function of the kidney, blood volume, body weight etc. The average dialysis time is 4 hours. Many people are on the machine even longer. Often times you have to wait for a machine. It can take 20 minutes to get on the machine and 20 minutes to get disconnected (sometimes more). There's also travel time to and from the center. So most people are looking at a 6 hour + experience three times a week. This is the part time job you never wanted. It's not merely inconvenient. In fact, it's so difficult that only 23% of people on dialysis work regular jobs.


• "I have the healthiest blood on the planet." WRONG. WRONG. WRONG. Dialysis, at its best, is a substitute for 15% of normal kidney function. She also didn't adequately explain that dialysis not only filters toxins from the blood, but also removes excess fluid from the body that your kidneys can no longer get get rid of. For example, in each dialysis treatment they remove over 6 pounds of fluid from my body in the dialysis process. Imagine losing six pounds in such a short span. Most people feel like dog shit after dialysis. All Ms Cole would have to do to understand this is look around the freaking room the next time she's in dialysis.


• "All dialysis facilities are the same." Wrong again. Here's just one example of a hundred of how they can be different. The facility that I go to discards dialyzers (the blood filter) after use. Other facilities clean their dialyzers with bleach and reuse them when the patient comes back for the next treatment.


• "I have been on dialysis in Istanbul, Milan..." Good for her, but Medicare and most insurance companies will not pay your dialysis costs if you go out of the U.S. BTW, dialysis costs close to 12K a week, or nearly 500k a year. She made no mention of the costs.


• She poo-pooed the National Kidney Foundation for focusing on "prevention." That's just stupid. Prevention can keep most of the 26 million people with kidney disease from progressing to kidney failure.


• "They really don't know what causes kidney failure or how kidneys work." That's absolute nonsense. The kidneys are one one of the best understood organs.

I apologize. I realize this has been a rant. I don't condemn Natalie Cole for how she got kidney failure, many would and do. I don't have an issue with her using celebrity to solicit an organ donor. I don't begrudge her that. Larry King held up a sheaf of people who sent email that they were willing to get tested. I think that's wonderful.

What I don't like is that she was poorly informed and a poor advocate for the rest of us. And that's why Natalie Cole sucks.

If you are interested in learning more about organ donation, please click the graphic above or visit http://www.donatelife.net/.

Anniversary

March 26, 2009

Around this time last year, I returned home from the hospital after living through kidney failure. In retrospect, I shouldn't have been surprised. In 1987, the nephrologists told me I had 20% function in each kidney and estimated 2 years until kidney failure. I was 19 years old then and the diagnosis did a Rock 'Em Sock 'Em Robot punch to my skull. The news knocked my concept of "self" into a mist that floated outside my body. I felt very temporary about this world and my prospects on it.

It took 10 years to regain some semblance of consciousness. Thankfully, I have good friends and a supportive family. I avoided any truly destructive behavior, was smart enough to always take my high blood pressure meds and stayed away from known kidney killers. I learned to cope with or ignore the exhaustion, headaches, and gout attacks. I directed my limited energy into work and avoided thinking about the future because keeping busy and good old-fashioned denial seemed to be my best coping strategies. 2 years stretched to 22.

Denial is a mule that can pack a lot of weight. A few years ago, I noticed that I wasn't performing as well at work. I had a hard time having the impact and driving the kind of change that had been so satisfying. I chalked it up to burnout. I contemplated changing careers. I thought that maybe I was depressed and considered anti-depressants and counseling. I decided I was far too fat and got in shape and lost a ton of weight. I went on a half-hearted search for an artistic outlet to replace acting and writing that were so important to me when I was young. Finally, I broke my vow never to marry and even invested in a dog. That's a ton of good positive weight for the mule. It felt good. It still feels good. I was living.

Unfortunately, my ass continued to drag (so to speak). I could barely get out bed. Honestly, I thought it was mental. It seems ridiculous now, but I refused to believe or acknowledge it could be kidney disease. It wasn't until my hands swelled to size of surgical balloons and my face was yellow and puffy with fluid that I looked in the mirror and realized, "oh shit, I'm in kidney failure."

So, a year ago after an emergency doctor appointment, I was hospitalized. Just in time, by the way. My blood pressure was something like 60/40 when I was admitted. Today, I have been on life saving dialysis for one year. I'm not celebrating with a cake and candles, but perhaps I should. Anniversaries are about counting stuff, so here are the numbers: 1 year, that's 156 dialysis treatments @ 4 hours a pop on the machine for a total of 624 hours, or 26 full days. I have also been on the kidney transplant list for six months with probably another 2 years to go.


You know what? I have never been happier. Being stuck in a chair has given me the time to write that I could never seem to find. It's slow going because my brain fuzzes out, but I already have 75 poems to my name and a finished book manuscript. I also know what truly matters to me. I have wonderful friends, a loving wife and an insane dog.

Best of all, I no longer feel temporary about myself.

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.