by Dan Savage
on Thu, Sep 29, 2011 at 12:23 PM
The American health care system is cruel (45,000 Americans die every year for lack of access to health care) and unusual (we are the only industrialized nation that does not provide health care for its citizens). Americans who don't have access to health care—people who aren't insured, people whose insurers drop them the moment they get sick (listen or read this This American Life piece about "rescission"), people who are unemployed, people with pre-existing conditions, people who are "uninsurable" (a.k.a. ill people who desperately need health care)—are often reduced to begging for help.
Which brings me to my friend Steven Hawley.
Steven is a musician and DJ who lives in Milwaukee. I got to know Steven after Terry, a fan of Steven's music, brought Steven to Seattle to DJ a club night. In addition to doing his own music with his band Codebreaker and DJing (here's a track that Steven created with Kathy Diamond), Steven worked at a music equipment supply store as their keyboard/synth salesperson. His employer did not offer health insurance. Shortly after we met Steven—shortly after he released his first solo album—he began to have health problems. Crippling health problems that prevented him from touring to promote his album, then working, and finally living independently. Steven writes:
Seven months ago my life came to a screeching halt due to a sudden inability to properly exhale. My exhalation levels are less than 40% of what's normal so far nobody has really seemed to figure out why. I have NO history of breathing problems, but this did come on me suddenly after taking two rounds of the antibiotic, Amoxicillin for an apparent sinus infection last Feb. My symptoms are:
* Severe shortness of breath, primarily with an inability to exhale. * Damp/wet feeling in the dead center of my chest cavity. * Wet, non productive cough. * Wheezing, whistling sound upon exhalation. * Random chest pains * Achy lungs * Erratic heartbeats.
My apartment for the last five years was very damp and musty, and there was some visible mold. What I'm not sure of, really, is if I'm the a victim of black mold some other fungus. Or if my issue isn't primarily mold, I dunno what it is. But it's now strongly suspected. Of course, no insurance company will touch me now due to my new 'pre-existing' condition and the charity/financial assistance programs here won't do any of the necessary workups—or anything pricey really—to diagnose or treat me.
I literally have been unable to do anything for seven month. I'm so depressed, distraught & confused. My day consists of trying not to move until it's time to go to bed. The shortness of breath 24/7 is literally that bad. My whole life as I knew it was taken away from me virtually overnight. Before this, I ate mostly raw foods, worked out, and had hardly ever been ill.
The rest of this post is a two-part bleg.
First, a crowd sourcing bleg. I want to tap the wisdom of any docs out there—particularly any pulmonologists in the Slogiverse—and tap the connections of anyone who knows any docs out there. Steven is desperate for answers and any expert advise, insight, or recommendations—that's expert advise, insights, and recommendations from concerned and qualified individuals—would be welcome. You can share your thoughts (and qualifications) in comments or email me and I'll pass your note on to Steven.
The second part of this bleg: Steven needs expensive diagnostic work done. He needs a bronchoscopy (a camera stuck down into chest to take a look around) as well as complicated, invasive, and expensive lung biopsies. Have I mentioned that these things are expensive? Steven is—again—uninsured and, under our current system, he is now uninsurable. He doesn't have family that he can fall back on. With great reluctance Steven has created a Chipin account to raise money to get the tests he needs. Like a lot of Americans who have to beg for for money to pay for their health care, Steven feels mortified and humiliated about asking strangers for help. He has raised a little more than $1700 so far; the bronchoscopy he needs costs $3000.
Finally: Steven has been in and out of ERs since he became ill. His frequent visits to ERs for emergency care—he goes in when he feels like he's about to suffocate to death, the ER docs stabilize him and send him home—will ultimately cost all of us more than a bronchoscopy, biopsies, a diagnoses, and a treatment plan ever could. The expense of his frequent ER visits will get passed on to the rest of us in the form of higher health insurance premiums and higher hospital costs. Which means we're spending more money to keep Steven in pain and in limbo than we would have to spend to heal him. It's the US health care system in a nutshell: cruel, unusual, and obscene. And speaking of obscene...
Sloggers will remember this moment from a recent GOP debate:
We spent a week on Slog telling ourselves that we're better than that, that we're better than they are, that we wouldn't let a hypothetical man die. Now let's prove it. Steven isn't a hypothetical. He's real. Don't let him die.