Stay the Course

January 18, 2011 at 10:32 pm (Uncategorized)

I just got the bill for the surgery I had last month to implant a defibrillator/pacemaker to protect me from keeling over dead from the sarcoidosis in my heart.  The surgery itself cost around $7,000, which seemed almost reasonable considering that I was attended to for two hours by two doctors, four nurses, and a representative from Boston Technologies (the defibrillator manufacturer).  The shocker was the nearly $70,000 the hospital charged to keep me overnight.

Good thing I got the defibrillator before I opened the bill.

Those of us in Chronic Town can become inured to ridiculous medical bills, so let me reiterate: it cost $70,000 for me to spend 22 hours in the hospital.  That comes to about $3,182 an hour.

$70,000 is nearly double the median annual household income in Montana of $42,788, according to the Kaiser Family Foundation.  $70,000 could buy a starter home in Helena.

I’m lucky to have health insurance—and not just any insurance, but a policy administered by the State of Montana.  I’m doubly lucky that my husband, Jay, has zealously advocated my case to our insurance company for my seven years in Chronic Town.  I’ve got my own case worker at the insurance company who is familiar with sarcoidosis.

When the first big medical bills related to my sarcoidosis arrived in my mailbox in 2004 and 2005—$20,000 for the mediastinoscopy that determined I had sarcoidosis, $7,000 for the PET scan to ascertain if the disease was responsible for nerve damage—I worried about the percentage I had to pay.  Figuring out how Jay and I could afford thousands of dollars of medical bills on his government salary was stressful enough.

My perspective changed when my sarcoidosis resisted the cheapest treatment (corticosteroids) and spread to my brain.  I needed regular, costly infusions of chemotherapy drugs and biologics like Remicade to curb the debilitating neurological symptoms the disease caused.  In 2007, I went from spending $10 for a month’s worth of Prednisone pills to getting $20,000 Cytoxan infusions twice a month and $15,000 Remicade infusions every month.  Getting sicker also meant frequent hospital stays that cost thousands of dollars a pop.

When I began to rack up monthly medical bills of $60,000 or more, my worry blossomed from the concrete concern of paying my share of these mind-boggling bills to the unbounded terror of “maxing out” my health insurance plan in the not-too distant future and then being responsible for every dime of these medical bills.

I learned that my health insurance plan has a lifetime limit of $2 million.  For those of you outside Chronic Town, $2 million probably sounds like a plenty of money—more than enough to cover annual doctor’s visits, hospital stays to have a baby or two, prescriptions for blood pressure medicine, and a few x-rays and lab tests.  My lifetime limit looked more finite with each big medical bill I opened.  That once-bottomless pot of money was on pace to run out in a couple more years—unless my sarcoidosis went into remission or we changed our health care laws to prohibit such caps.

Imagine our thrill when Congress passed and President Obama signed the Affordable Care Act last year.  Among the many good things the law enacted was an end to lifetime caps like the $2 million I was fast approaching.

Imagine our dismay when Republicans regained control of the House of Representatives and made repealing the Affordable Care Act their top priority.

I’ve tried to keep this blog mostly apolitical.  But I won’t keep quiet about Congress’ vote to repeal the Affordable Care Act on Wednesday, January 19, 2011.  The stakes for staying mum about what is decent and fair feel much higher when my fellow citizens’ literal well-being is involved.

Please, please, PLEASE call your representative and urge her or him to vote “No” on repealing the Affordable Care Act and to stay the course as Republicans try to de-fund portions of the law during the next two years.

The mainstream media has been relatively blasé about tomorrow’s vote in the House of Representatives.  Whatever the House decides, the pundits say, won’t matter because even if the Senate also repealed the law, President Obama would still veto their repeal—and the Senate won’t have enough votes to override the President’s veto.  This scenario well may be accurate in the short-term.  But there’s another truth.  House Republicans plan on using the vote as a call to arms in a war that only begins tomorrow.  Expect a 2-year campaign of House Republicans attacking and defunding pieces of the Affordable Care Act.  Read this Politico article for the details:

There’s a lot more at stake than the question of my $2 million lifetime limit.  There’s protection against becoming uninsurable due to pre-existing conditions.  There’s protection against getting dumped by your insurance company for even minor, unintentional paperwork errors.  There’s the fundamental principle that part of living in a civilized society is helping ensure that even the most vulnerable have the basic necessities of life–which to my mind includes reasonable and reasonably affordable access to health care.  By adding your voice to the call to hold the line against the attempt to repeal—and then chip away at—the Affordable Care Act, you are taking a stand for what is right.  Making health care available to all Americans—especially children—is a no-brainer.

Republicans have done a great job obscuring the basic facts about what the Affordable Care Act accomplishes.  They’ve made it sound like health care reform is the agenda of a sinister President intent on harming a hapless populace rather than the new law of the land that brings concrete benefits to us all.  Re-packaging the Affordable Care Act as “ObamaCare” serves this agenda.  So does demonizing President Obama.   Look at this offering from the American Patriots for Conservative Action for a fine example of these two tactics:

Then there’s been a flurry of deliberate misinformation—that “ObamaCare” will mandate abortions and create “Death Panels” that will pull the plug on Grandma’s ventilator.  More recently, Republican critics of health care reform have wrapped themselves in the mantle of fiscal responsibility.  In the rapidest about-face in recent political memory, the same folks who rammed through another extension of tax cuts for the richest Americans are suddenly deficit-hawks opposed to spending an extra dime on the uninsured.  By doing so, they choose to ignore the (non-partisan) Congressional Budget Office’s prediction that the new law will save $100 billion over the next ten years by curbing waste and cutting fraud.

Why so many Americans allow themselves to be tied into knots at the idea of the government they have elected overseeing their health care system—as opposed to our current system of unaccountable CEOs and other such privateers whose only allegiance is self-interest—is one I’ll never understand.  But suggesting that the government will have a role in health care reform does the trick every time.  I, for one, find the idea of federally-mandated regulations comforting.  Think about it.  Who would you trust with your health—the CEO of a company that profits by pinching pennies (and thus denying care) on every person in its grasp or a (gasp!) government bureaucrat whose interest is in following the law?

The rhetoric and lies pander to our basest self-interest.  It’s easier to appeal to our reptile brains that are intent on protecting what is ours—in this case, whatever insurance we think we have—than to nurture our humanity and look for solutions that can benefit us all.

An interview between FOX News host, Greta Van Susteren, and Representative Steve King (R-Iowa) is a perfect example of how the “Repeal ObamaCare” folks are pushing our selfish buttons (and telling a passel of fibs) in their campaign.  You can read the whole interview at

Rep. King follows the Republican playbook to a new low.  Rather than engage with anything resembling a fact, he opts for name-calling.  “ObamaCare” is a “malignant tumor” that “eats away American liberty.”  After reeling off the standard list of lies about the Affordable Care Act—that it is un-Constitutional, that it will restrict access to doctors and diagnostic tests—Rep. King comes up with the “real” number of uninsured Americans.  Even with cooked books, he admits to 4 million uninsured Americans.   For these unfortunates, Rep. King has little to offer. “There will always be those who slip through the cracks,” he says when Van Susteren asks what his party has planned for those who can’t “pay for health care for whatever reason.”  When she pushes him on who will be responsible for the uninsured if “ObamaCare” is repealed, he is cagey.  Perhaps, “the states can deal with that.”

Then Rep. King pivots.  Before we have time to let the idea of millions of our neighbors and co-workers without health insurance sink in, he lets us off the hook.  You see, those 4 four million are “less than 4 percent of the population. And it’s wrong for us to try to change 100 percent of the policy to address less than 4 percent of the population in America.”  In other words, greetings, Lizard Brain, worry not about your fellow man!  It would be wrong to let the minority trouble us.

Just before I get caught up in the logic of Rep. King’s lies, my own reality comes crashing down on me.  I’ve had the misfortune of getting sick with a chronic—and expensive—illness. Will “the states” help me pay my next $70,000 hospital bill when I’ve maxed out my health insurance policy?  I think not.

If you need a poster child for someone who has followed all the rules when it comes to health insurance and is still in danger of losing my coverage, use me.  I’ve never once let my insurance lapse.  A year before I was diagnosed with sarcoidosis, Jay and I even moved back from our 18-month sojourn on a Pacific island so that I wouldn’t have a gap in coverage.  I’ve paid my premiums on time.  I’ve paid my share of every medical bill I’ve gotten—even if it’s meant financial hardship.

Look on any street in Chronic Town and you’ll find dozens more people like me.  We’ve played by the rules and we’ve paid our fair share.  Whether we like it or not, our future is one of more medical care and more medical bills.

Those of us in Chronic Town need your help.  Please, please, please, call your representatives and ask them to stay the course.  The Affordable Care Act may not be perfect.  But at least it’s a start.


  1. Martha Kohl said,


  2. Basil Rene said,

    I feel for you and your fear of hitting your insurance ceiling. So far I have had one open lung biopsy, a pfo closure, one defibrillator implant and a right heart catherization, all at a cost of close to $600,000.00. My medication costs over $7500.00 per month and there are the never ending tests and doctors appointments for everything. I am afraid to see how close I am to my limit now! I will do my part to get this out there. Something needs to be done.

  3. Roslyn Heafitz said,

    Would you consider letting us forward this blog to our congress men and women? Well said especially re the links.

    • Rebecca Stanfel said,

      Hi Roz,

      Thanks for thinking of forwarding this entry to your representative. I am honored at the prospect. Please feel free to pass along anything you read here to anyone who might find it relevant, useful, or interesting. The same holds for all Chronic Town readers. My one request is that I get proper attribution.

      Thanks for reading and taking the time to write me.


  4. Rebecca Stanfel said,

    Hi Basil,

    Thanks for writing. It sounds as though you and I have gone through a lot of the same testing and procedures for sarcoidosis–defibrillator implants, right-heart catheterizations, and lung biopsies.

    It really stinks that on top of enduring all this, we’ve also got to worry about maxing out our health insurance. Like you, I also cultivate a degree of denial about exactly how close I’m getting to my $2 million lifetime limit. I know I’m getting near it, but think it’s probably better for my blood pressure and overall well-being if I don’t know just how near it I am.

    Thanks for joining me in trying to raise awareness about this issue. I know how little energy we have for much more than just surviving in Chronic Town, so I’m doubly appreciative of your time and effort.

    Hang in there. And thanks again for writing to me.


  5. Rebecca Stanfel said,

    Hi again, Basil,

    I just spent some time on your excellent blog–Life with Sarcoidosis. I’d like to provide a link to it once I get my “Blog Roll” up and running. Maybe we could trade links?

    Until then…all you Chronic Town readers should check out Basil’s blog!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: