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U.S. healthcare is too costly for Kevin Steinman, so he's moving to Norway

U.S. healthcare is too costly for Kevin Steinman, so he's moving to Norway
Photo by Laura Dart

See Also:
Kevin Steinman says farewell and thanks to the Twin Cities

Kevin Steinman checks in from Norway to talk about the aftermath of the Oslo tragedy
Year in Music: More of Minnesota's best 2011 releases

Kevin Steinman will be a Minneapolis-based singer-songwriter until later this summer. After a farewell show at Bryant Lake Bowl on July 23, he's moving to Norway, where he can expect his healthcare treatment to be far less than $9,000 annually. Below, he tells his story.

When I named my most recent record Pre-Existing Condition, it was to the rest of the world just a metaphor, or a tongue-in-cheek reference to a medical system we're all familiar with. Until now, I've resisted speaking out about my chronic condition except to very close friends and family.

But with the Supreme Court upholding the legality of Congress' Patient Protection and Healthcare Reform Act of 2010, AKA "Obamacare," I feel like I ought to give one musician's testimony to how our present system fails us -- even those of us lucky enough to be "insured." I know that this story is only one of millions, and that many stories are far worse than mine. But I offer it to remind us that yesterday's victory still leaves us squarely in the jaws of a for-profit system, designed to make money for its shareholders.

I first noticed something was wrong in the summer of 2002, when I felt dehydrated, and had a prolonged bout of severe diarrhea. As an otherwise healthy young man, I did what a lot of Americans do: Ignored the symptoms, hoping they would go away on their own. I had health coverage - an anomaly for most working musicians in their mid-20s. My band had decided to get health insurance, foregoing a raise the previous year. Fiscally conservative parents everywhere were proud!

But I was terrified of the out-of-pocket costs associated with a round of testing at a doctor's visit. For that reason, instead of seeing my regular doctor, my first visit for this ailment was to the emergency room, after passing out on my way to the bathroom. A wrong diagnosis and another trip to the emergency room later, I finally booked an appointment with a gastroenterology clinic where I was diagnosed with Ulcerative Colitis, an immune system disorder with no known cause, and no known cure.

When you have Colitis, your gut's immune system thinks it's under attack, and goes into overdrive, 24/7. This causes a whole slew of bad stuff to happen, resulting in open sores forming on the inside of your lower intestine, preventing normal digestion. This diagnosis was a huge shock to my bulletproof, marathon-running, 26 year-old self.

I was prescribed steroids, and the mildest form of immunosuppressant pills (12 per day!), and thankfully felt better within a couple days. This "remission" period lasted nearly 5 years. Because I was signing the checks for our band's health coverage, I noticed that my health insurance premium increased at a much faster rate than my band mates'. I didn't think much about it at the time, because I was only paying five dollars co-pay for a bottle of medicine that was keeping me healthy. When I learned that the "real cost" of that bottle was $120, I felt as though the system was telling me, "Not only are you fighting a chronic sickness, but you are this close to not having enough money to stay healthy."

My remission ended two weeks before I got married in Norway in June of 2008. During final preparations for the wedding, I began having frequent, urgent trips to the bathroom as my medicine stopped working literally overnight. Worse, blood started appearing in my stool. On a Saturday a couple weeks after our wedding, I visited a Norwegian doctor, who prescribed steroids, to no effect this time.

He called me three days in a row to see how I was doing. The only two questions asked by the nurse in the waiting room were, 1. "What is your name?" and 2. "How do you feel?" They didn't care that I didn't have a Norwegian social security number, health insurance, or reside in Norway permanently. The only requirement for treatment was that I was not feeling well. The Saturday emergency visit, and medicine cost just $100. Those kind phone calls from the Norwegian doctor were free.

After returning home, I spiraled into the worst period of physical health in my life: eight full months of no relief from heavy diarrhea filled with blood. My 6'1" frame withered away to 127 pounds. Often I would spend up to six hours at a time, multiple times per day, in the bathroom. This effectively ended my social life, and took a heavy toll on my songwriting, performing -- in short, everything. Eating became a nuisance -- nothing but a source of nearly constant, excruciating pain. This period also brought with it the darkest thoughts of mortality. It was during this time of my lowest physical and emotional weakness that I was forced to fight our health system most vigorously.

U.S. healthcare is too costly for Kevin Steinman, so he's moving to Norway
Photo by Laura Dart

In September of 2008, my gastro clinic had put me on a new medicine that they said would take four months to begin working. I waited, but nothing happened. When the four months were up, I was scheduled for a colonoscopy, which was supposed to be covered under my Blue Cross preventive care because Ulcerative Colitis sufferers are at a greater risk of colorectal cancer. The results of the procedure were shocking and immediate: in the recovery room, I got the news that I had the worst case of full-blown Ulcerative Colitis my gastro specialist had ever seen. The doctor who performed my colonoscopy recommended immediate removal of my lower intestine.

While I considered my options, the bill came for that procedure: $900. I called Blue Cross in disbelief, asking if it shouldn't have been covered under their preventive care guidelines. The customer service representative told me that a polyp was found, and therefore, at that moment, it was no longer a preventive procedure. "But shouldn't it be in your company's best interest to determine whether or not I have cancer?!" I cried, to which he snapped, "This has nothing to do with cancer!" And it didn't. It had to do with whether or not they could make money. That was the moment I lost it. I was still spending upwards of 10 hours a day on the toilet, in dizzying, almost constant pain, feeling like something inside me was tearing me apart, bringing me closer and closer to dying.

 

Simultaneously, my premiums skyrocketed to double what they had been, and they would soon triple. I tried to switch plans, but discovered that it was impossible; no new insurance company would have me. I was trapped in my plan because of my pre-existing condition. I applied for Medicaid, but was rejected, because my income was (just) over the 1000 dollar per month threshold. Ultimately, instead of the colon removal, I opted for the less radical path of two-hour-long intravenous infusions of Remicade every eight weeks. I am very happy to report that since three days after I began those treatments in April 2009, I have been nearly 100% symptom free.
...

I wish I could at this point say that the U.S. health system has been a net success. Physically, it absolutely has. My caregivers, once I found the right clinic, have been mostly attentive and, with one frustrating exception, highly competent. But my renewed physical health since 2009 has come at a heavy psychological and financial cost.

My personal premiums now amount to almost $500/month. That cost is just for me -- my wife, Ina, is not insured here. When you throw in the 20 percent co-pay for my treatments and labs  -- which I max out by June every year -- that comes out to roughly $9,000 annually. This is not exactly something I budgeted for when I decided to be a musician at 21.

We struggle with these costs every month. I will need 6 Remicade treatments per year for the rest of my life. I maintain that even if we'd been high wage earners, able to cover these increased medical bills, the psychological cost of this process would still have been prohibitively high. It's hard to stop thinking that, uninsured, my treatments would cost $5000 a pop. Especially when my Blue Cross Explanation of Benefits, and clinic bills arrive on a bi-monthly basis. This is a trying exercise in maintaining one's cool.

I chose to fight the system, and eventually, my $900 colonoscopy was written down to more reasonable bill. But I worry about others in my situation or worse, who don't have the energy to fight the system, and are forced into foreclosure or bankruptcy by their unaffordable medical bills. It just doesn't seem like it should be possible that a country so supposedly committed to fundamental human rights -- rights such as free speech, freedom of religion, and, heck, the freedom to own guns, can't place more emphasis on people's ability to receive affordable health care.

Ina and I are planning on moving to Norway in July, and sadly, my health is one of the reasons why. I wish I could say I was moving just for the change of scenery and the new opportunities. And I must admit I'm excited to begin a new musical journey there. But I love the Twin Cities' music community, am proud to be a part of it, and will miss it terribly. All told, we feel like it will be better for us to not have to struggle with the mounds of paperwork that accompany my treatment, to say nothing of its staggering costs.

And, yes, I understand that the free Norwegian health care is bundled into the costs of daily life there. Higher prices for items like gas, alcohol, candy, and automobiles support a political culture where looking out for the weakest in society is considered natural, even among most conservatives. If we do end up spending more on our living expenses there, and I never see another health document with thousands of dollars billed, I'll consider it very worth the move for my soul.

While yesterday's ruling by the Supreme Court appears to be a step in the right direction, it's important to remember that in the United States we are still fighting to stay healthy within the confines of an amoral, for-profit health system. I hope that this decision spurs us to realize that health care should not be a luxury, nor should it be about the survival of the fittest. I for one will not have peace of mind until the only requirement for medical treatment in America is that you are in need of medical treatment.

"...the moral test of government is how that government treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; those who are in the shadows of life; the sick, the needy and the handicapped. " ~ Last Speech of Hubert H. Humphrey 


Kevin Steinman's farewell show. 9:30 p.m., Monday, July 23 at Bryant Lake Bowl on 7/23/2012. $8 advance, $10 door. RSVP here.

See Also:
Kevin Steinman says farewell and thanks to the Twin Cities
Kevin Steinman checks in from Norway to talk about the aftermath of the Oslo tragedy
Year in Music: More of Minnesota's best 2011 releases


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