(Photo: England / Flickr)

We got accountants playin’ God and countin’ out the pills Yeah, I know, that sucks – that your HMO Ain’t doin’ what you thought it would do But everybody’s gotta die sometime… – Steve Earle

Nothing so thoroughly dominated the American political landscape over the last year more than the Republican assault on the Affordable Care Act, colloquially known now as “Obamacare.” The GOP’s eternal refrain that “Government is the problem” was used as a battering ram against the law, and House Republicans have voted to repeal or denude it exactly fifty times as of today. Ted Cruz and his cohort of wreckers shut down the government over it, and the Tea Party base broke out their Sharpies to make gloriously stupid protest signs that read “Government Keep Your Hands Off My Medicare.”

Amusing as all this was, the dark underbelly of it all is dangerously wrong. Yes, the ACA exchange website rollout was a train wreck, and yes, a small segment of the population has had problems with the new law. This is not in dispute. Websites can be fixed, however, and problems can be solved. None of this holds a candle to the awesome misery and financial pain inflicted upon the populace by the holy and sainted world of private business, known in this instance as the insurance industry.

My own saga with these broad-daylight thieves began in late summer, when I moved my family to New Hampshire. We were living in Boston before the move, and had health insurance through my wife’s employer. My wife has Multiple Sclerosis, and one of the big reasons we felt comfortable about moving was that, if she changed jobs after the move, she could not be denied health insurance due to her pre-existing condition, thanks to the ACA.

We made the move, and my wife’s employer transferred her to their location in Concord, more than an hour’s drive away from our new home. She worked full-time to keep the health insurance, but after three months of ten-hour days combined with almost three hours on the road getting to and from work, it became clear that the situation was untenable. She was exhausted all the time – fatigue is the #1 danger zone for people with MS; it leaves you wide open for an attack – and worse, she felt like she was missing out on raising our daughter because she was gone more than thirteen hours a day.

On top of that, winter was coming, and the last thing she wanted to deal with was driving one-lane roads at night in a snowstorm, which would have happened more than a dozen times given the severity of this winter. After careful consideration, she asked her employer to transfer her to a location only 20 minutes away from home. The price of that transfer: going from full-time to part-time, and losing our insurance.

We looked into the insurance available through my employer, but came to the conclusion – based on the information provided on the Healthcare.gov website – that going through the exchange was our best option. So we went to the website, and shopped for new insurance. The website was klunky, to be sure, but when I reached a point where it didn’t seem to be making sense any more, I called the 800-number provided and spent a couple of hours talking to a tremendously nice woman with a near-parody Wisconsin accent – “Ooh yah, dearie me” – who was amazingly helpful, and got me the rest of the way through the process. Given the fact of my wife’s MS, our process was particularly complicated, and this person did everything necessary to make sure we were taken care of.

That’s when my dealings with the government ended, and my dealings with the insurance industry began, and it has been downhill at speed ever since.

There is exactly one insurance company in New Hampshire peddling plans through the ACA: Anthem BlueCross BlueShield. After completing the enrollment process through the exchange, the next step was to deal directly with Anthem, which quickly came to be about as fruitful as trying to batter down a brick wall with my daughter’s teething ring. First it was two weeks of phone calls, involving serial hours listening to on-hold music that could easily have come straight out of a bad porn movie soundtrack, just to establish that Anthem actually recognized Multiple Sclerosis as a real disease. Then it was another week of porn-flick hold-music to get a straight answer on the location and availability of MS doctors that were “in the network,” and thus covered.

Every phone call yielded a different set of answers, a different phone number to call, which invariably led nowhere. The calls that finally yielded answers and useful information felt like luck-of-the-draw; we either got someone on the line who actually felt like working that day, or were simply fortunate that the person we spoke to actually picked the correct answer off their sheet of go-away pat responses. In the end, all of this took so long that we wound up shelling out nearly a thousand dollars to get COBRA coverage from my wife’s employer, just to make sure we had something over our heads. Finally, after almost a month of nonsense, we managed to get everything squared away, I cut Anthem a check, and we received insurance cards in the mail.

All was quiet for a while, until the beginning of last week, when my wife’s MS medication began to run low. Previously, and with no hassles, the process to acquire a refill for her prescription was to call the company that makes her medicine about a week before it ran out, place an order for a refill, and it would be delivered two days later. When we called the drug company at the beginning of last week, however, we hit a great big pothole: they could not do the refill until our new insurance company approved it.

My wife contacted Anthem a month ago to clear the way for this approval process. They required a statement from her neurologist in order for the prescription to be approved. That statement was acquired, and sent to Anthem, a month ago. According to every conversation we had with Anthem this week, however, the statement from her neurologist did not exist, and the process had to begin again from scratch.

And so it was phone calls to Anthem, and more phone calls, and hold music – between the two of us, my wife and I have logged enough hours on hold to fly to Neptune and back – and one answer with one phone call once we finally got someone on the line, another answer with another phone call once we finally got someone on the line, and all the while my wife’s stock of MS medicine dwindled, and dwindled, and dwindled.

Last Wednesday, fearing the worst, my wife began rationing her medicine: one dose a day instead of two. We made this very clear to the people at Anthem – I HAVE MS AND AM ALMOST OUT OF MEDICINE – but still, it was “Call this number” that went nowhere, “Call that number” that went nowhere, one answer, and then another, no two ever the same, the awful infinity of hold music, and then oops, we accidentally inverted the numbers on your prescription, we have to start over again, we will call you back, and then silence, and silence, and silence.

For those not in the know, Multiple Sclerosis is an auto-immune disease that causes the body’s own immune system to attack the brain. Think of the neurons in your brain as if they were stereo cables: copper wiring encased in a rubber sheath. With MS, the immune system chews through that rubber sheath and attacks the wiring, destroying it. The damage done is irreversible, and in the worst case can cause paralysis, blindness, weakness, loss of motor function in arms and legs, an inability to swallow, and permanent disabling pain. It is a filthy, wretched disease that does not even have the common decency to kill you after it is done torturing you; it leaves that to the other diseases that come galloping through the door after your body has been destroyed. The only thing keeping the beast at bay is my wife’s medication. When she has it, she is fine and strong, able to work and hold her child, able to live a normal life. When she does not have it, she is hedging Hell.

This was the cocked pistol at my wife’s head as we tried and failed all week to get Anthem to approve her prescription refill.

By Friday morning, we were frantic; she had one dose left, her MS symptoms were escalating rapidly because she had been rationing her medication for days, and if we didn’t get it done today, there could be no Saturday delivery of the medication, and we would be stuck with no medicine until after the weekend, and likely into the middle of the next week, if not beyond. Repeated calls to Anthem resulted in the same lather-rinse-repeat runaround, so in extremis, we reached out to her neurologist in Boston to see if he could help.

My wife’s neurologist is one of the best MS specialists in the city of Boston, which makes him one of the best MS specialists on the planet. He was appalled and astonished by what we had been dealing with, and took it upon himself to deal with Anthem himself…and after five hours on the phone with them, getting one different answer after another, he was finally told that approval for my wife’s medication had to be put before a review board, and would take at least 72 hours, and it wouldn’t happen until Monday at the earliest. In all the phone calls we’d made to Anthem regarding this prescription, not one person had told us about a review board. One of the best neurologists in practice was forced to surrender.

As a last-ditch Hail-Mary option, my wife’s neurologist told us to call the drug company directly; in extreme circumstances like ours, a lot of pharmaceutical companies will provide enough medication at no cost to serve as a bridge until a prescription is approved…but by then, it was after 5:00 p.m. on Friday, and when we called the company, we discovered they were closed for the weekend. It was over. My wife took no medicine on Saturday, and took her last remaining dose on Sunday night. She has not been on her medication since.

On Monday morning, a phone call to the drug company yielded immediate results: a month’s worth of medication was coming, and should arrive soon. Still, when my wife goes for her annual MRI, I expect to see a new brain lesion on the print-out of the scan, caused by this gap in her course of medication. We will name it “Anthem,” in honor of all the people who worked so diligently to make sure she could not get her medicine.

As of this writing on Wednesday night, we still have heard no word from Anthem as to the status of their suddenly-revealed approval process for my wife’s medication.

I believe down to my bones that what we have endured at the hands of these cretins has been entirely deliberate. No amount of incompetence or laziness can account for the appalling lack of response, the runaround, and the sudden appearance of this “approval process,” we have gotten from Anthem. They do not want to co-pay for my wife’s medication or for her disease in general, and are doing everything they can to avoid it. Period, end of file.

If you think this is a unique situation, a one-off that does not represent the general experience people have with the insurance industry, think again. I made mention of our situation on social media, and the testimonials I received in response were both astonishing and harrowing:

S.L.: As someone who worked for a big, local health insurance company, I can tell you that this sort of thing happens a LOT. And it’s one of the reasons I didn’t last too long, at that job. I felt like the biggest piece of poo, for having to follow “company guidelines” that royally screwed people over. I’d rather scrub toilets than to ever work in the health insurance field again.

J.R.: I have rheumatoid arthritis and have had nothing but hassles with BCBS denying coverage for blood work and medicines. In fact, I was on the Arkansas Risk Pool because I have a “pre-existing condition” and no other health insurance company would take me. But now that very same Risk Pool is not going to pay my office visits and labs from last year because…(wait for it) I have a pre-existing condition! Fuck all of them. I am sick of being punished for my chronic condition.

R.M.: As a mental health professional I’m convinced insurance companies will do ANYTHING to delay or avoid payment. Michael Moore understood that years back, providers bang heads against walls and get scared shitless we’ll be caught up in the outcomes of reckless disregard for what patients desperately need, and it’s the love of profit, pure and simple. The history of “insurance” in its many forms is book-worthy, from the black and poor families who used to save every penny for when the insurance man came around, often just so they’d get buried without ruining their families, to the people who literally sit and go over dental x-rays and challenge whether you really need that more expensive treatment when they’ve never laid eyes on you, to the many people who have been in your wife’s situation.

T.R.: Similar thing happening here with my lead-poisoned kiddo – waiting 4 months – sick 11 year old misses 9 weeks of school – waiting to see a specialist because he “isn’t in enough pain to expedite” and he can’t eat or breathe without pain – we finally get in to specialist on Wednesday (Pediatric GI) and she said – and I quote ” I don’t even need to examine him really – I’ve reviewed all the paperwork” WTF – sending us away with a referral to a pain clinic! Fuck – an 11 year old needs to be in debilitating pain for four months so he can see an idiot who refers him to a pain clinic !!!

G.S.: Our insurance company did the same thing with my migraine medicine, zomig. Told me I could only have 6 pills a month- which is awesome when your migraines come in clusters, multiple times a day, weeks on end. We ended up having to pay hundreds of dollars to get them. Doctor even called in an override to no avail.

K.B.: I have stories, many of them from my husband’s last 6 months of life in hospitals, or the ten years before as he slowly became more ill each year. What killed him? Mostly incompetence or willful disregard. Steve had been in the hospital since April 5 for a surgery to remove an aneurism that had been allowed to grow to nearly 23% of his body mass. A man that was 6’4″ and right at 225 pounds. On his birthday (June 10th) he was about 145 lbs unable to walk at all without two people holding him.

T.S.: Once, when the firm changed plans, I found that my insulin pens were covered by the new one, but the syringe tops were not. The pens are sitting there full of medicine, but you must tap the pen with a syringe top to get at it, obviously. These needle are fairly expensive, and as an item that must be changed for every shot, I could go through 6-10 a day. Of course I spent weeks on this, and ultimately someone approved my claim, seeing the obvious problem. But I always thought it was a deliberate bottom-line choice to begin with, and that I was lucky to get a fix at all.

A.S.: I had a wrangle with United Health Care last year over a denied claim. I had had an echocardiogram to determine if high blood pressure was causing damage to my heart, a procedure covered for that purpose. However, the code submitted by the provider’s office indicated that the echo was done to DIAGNOSE high blood pressure, for which it is not covered.

M.S.: You’ll never hear me say a good word about any health insurance company, not after the one I had in 2001 decided that the only kind of chemo they would pay for is one that gave me congestive heart failure seven years later.

L.S.: I got out of the hospital yesterday and did the pharmacy drive thru for my pain control script on the way home. Had to pay for it out of my own pocket because of some screw up at the insurance company. It is fucking Sat. morning and I have just been released after a few days in the hospital trying to stop an internal bleed someplace around my spleen. Trust me when I say pain control was not an optional thing. I paid the man for those drugs and cussed while I did it.

K.F.: Humana screwed me over by first denying coverage for emergency surgery (because I had not asked Mother May I & instead relied on a doctor telling me I needed surgery—silly me), then covering the expenses after I made a ruckus, then a YEAR LATER, deciding on their own that they didn’t have to pay after all, resulting in me getting calls from a collection agency threatening all kinds of nasty stuff.

L.D.K.: I had Aetna tell me they wouldn’t pay for an anti-fungal prescription for my toenail fungus……after multiple appeals and proof (biopsy results) that only this certain (expensive) medication would be affective in curing it…..but that they WOULD PAY to have all my toenails SURGICALLY REMOVED!

I.B.: Harvard Pilgrim Healthcare canceled my prescription for Provigil when I lost my job. They said that since I no longer “do productive work,” I no longer needed a medication that prevented me from sleeping all day. My doctor had to write them a letter explaining that without the medication, I wouldn’t be able to SEEK productive work, let alone ever HAVE productive work. We eventually got them to reinstate the prescription, but it took a couple months.

S.C.: My health insurance company tried to refuse to cover the brand of ADHD medication I need and force me to use one that contains a dye I’m allergic to.

A.W.: My dad’s been a doctor for 40+ years. From talking with him, the growing bureaucracy and endless paperwork that has come to typify interactions with the insurance companies makes actually doing the job of caring for the sick increasingly difficult. He also knows a few doctors who were charged with insurance fraud, for lying to the insurers in order to get patients the treatment they needed.

I could share a hundred more similar stories. The pattern is self-evident.

One person who wrote to me asked the pertinent question: why, given all the new customers the ACA will be funneling to the insurance companies, would the industry be so intransigent in its resistance to the law? Why would they keep deliberately screwing people even though their balance sheet is being flooded with new paying customers? The answer, I believe, lies in an article I wrote back in November:

According to the American Medical Association, more than 81 million people currently suffer from some form of cardiovascular disease. According to the American Cancer Society, more than 11 million people currently suffer from some form of cancer. According to the American Diabetes Association, almost 24 million people currently suffer from diabetes; the Centers for Disease Control estimate that half of all Americans could suffer from the disease by the year 2050. The Centers for Disease Control estimate that some 50 million Americans suffer from arthritis, rheumatoid arthritis, gout, or lupus, 21 million of whom are disabled due to the condition. According to the Alzheimer’s Association, more than five million Americans are currently afflicted with Alzheimer’s disease, a number that will shortly spike as our Boomer population grows older. According to the National Multiple Sclerosis Society, some 400,000 Americans currently suffer from MS. According to the National Parkinson’s Foundation, between 50,000 and 60,000 new cases of Parkinson’s are diagnosed in America each year. The CDC estimates that close to a million people a year become infected with herpes. More than a million Americans are infected with AIDS. Some 79 million Americans are infected with the human papillomavirus (HPV), a disease that causes cancer in both women and men. That, right there, is more than half the country.

That, right there, is the reason. Whatever other flaws may exist within the ACA, the one aspect of it that is a perfect good is the law’s mandate against people with pre-existing conditions being denied coverage, or getting wildly over-charged because of their condition. Before the law’s passage, this pool of customers – more than half the country, by the numbers – represented the insurance industry’s main cash cow, their profit engine…and when the ACA became law, they lost that, and are now seeking to make up the profit gap wherever and however they can.

The ban on insurance companies denying coverage for people with pre-existing conditions, or over-charging for that coverage, is comparable to telling the Mafia they can no longer take kick-backs from the businesses under their “protection.” In the movie Goodfellas, the main character, Henry Hill, succinctly lays out the Mob’s business philosophy regarding those who are struggling to make ends meet:

“Business bad? Fuck you, pay me. Oh, you had a fire? Fuck you, pay me. Place got hit by lightning, huh? Fuck you, pay me.”

In other words, they’re going to get paid one way or the other. If the insurance industry can’t screw you by charging triple rates for your pre-existing condition, they will get their pound of flesh some other way, like denying or delaying approval of an expensive prescription for a serious medical condition that will ruin your body and your life. But they are going to get that pound of flesh, and nothing is going to stop them.

Fuck you, pay me.

The Mafia has broken a lot of legs over the years, and put a lot of bodies in the ground, and extorted a lot of money from fearful people who have no choice but to obey, but the Mafia is left in deep shade by the insurance industry in America. The Republicans have spent oceans of time over the last few years yodeling about fictional “death panels” being a part of the ACA, but those “death panels” are all too real, and have existed for years in the guise of insurance companies that will drain your body of blood before refusing to approve coverage for a transfusion.

So, yeah, those who rant on about government being the problem with health care in America are cordially invited to take a flying fornication at a rolling doughnut on a gravel driveway in the rain. If you’re going to ding the government for anything, ding them – ding the Obama administration – for willfully abandoning the idea of single-payer universal care in favor of allowing the shameless muggers of the insurance industry to retain control of the process. They were awful before, and are worse now, because they are scratching as hard as they can to make up for the revenue they will be losing because they can no longer shaft sick people on the books.

Abandoning the concept of single-payer health care is the Original Sin of the Affordable Care Act. While I and the half of the country dealing with pre-existing conditions are grateful for the prohibition against denying coverage to people thus afflicted, that protection is next to useless when dealing with the shark tank that is the insurance industry. They have less morality than a Mafia leg-breaker, but far more power, and someone decided to keep them in charge of the process anyway.

The wrong people are running this show. Again.