A few years ago I was managing the night shift at a call center when one of the CSR's came bursting out of the stair well onto the main floor and yelled "They're searching everyone in the parking lot." They were the cops, the searchees were our employees leaving work. A few days before someone had allegedly been mugged in that parking lot. The center director called the local sheriff and asked them to keep an eye on the lot at night. The fuzz apparently interpreted that to mean hide in the bushes strapped down in black armor like Dawg the Bounty Hunter and hassle anyone who walked out the door.
A lady, let's call her grandma, who should have been happily retired, came up to me and asked if I thought she could get in trouble for having her husband's pill organizer with her. He had Alzheimer's, she was his caregiver, and that organizer was loaded down with enough painkillers to make a junkie's day. It was then it hit me: I was holding some 'stuff' of my own, very serious stuff, already preloaded into injectable pens. It's called Humira and it treats a a disease called AS.
Anklyosing Spondylitis or AS is a genetic condition that causes painful flare ups and stiffness in the spine and joints. It is often first diagnosed when a patient suffers a recurrent and potentially excruciating eye condition call iritis. Untreated, over time, AS can cause irreversible damage to the spine, joints, eyes, heart, and lungs. Left completely unattended, the disease will slowly cripple roughly one quarter to a third of all patients diagnosed and/or result in partial or complete blindness in some, assuming they live to 75 or 80 years of age. A smaller group will suffer complications to the cardio-pulmonary systems that can significantly shorten life expectancy.
Humira is among some of the newer biologic drugs, i.e., drugs made from humanized E. coli -- or other bacteria and bacterial components domesticated by biotech firms. Along with Symphoni and Remicade, Humira treats rheumatoid conditions. Better yet, unlike pain killers or anti-inflammatories, it treats the cause of plaque psoriasis, Crohn's, and in my case AS at their source. These drugs belong to a class known as TNF inhibitors, because they neutralize the effect of a low abundance signaling protein which enable swelling and overproduction of replacement cells in bone, skin, and other tissue.
As cases go, mine is fairly serious. Without no treatment at all, not even aspirin, there could be times when I'd be bedridden from it. But there are also other times when I'm almost symptom free. So, to keep this in perspective, as medical conditions go, AS can be a real threat to quality of life, and maybe mortality down the road. It fucking hurts, all over sometimes, like hot fiery hornet stings in your bone or eyeball. But I'd take it over inoperable cancer or spinal cord injury any day. The good news is with old fashioned physical therapy, cortico-steroids, and painkillers of both the narcotic and NSAID genera, most of my symptoms can be managed. The disease progresses slowly, the pain under control. Better still, in my case, Humira shuts the disease down. Physical therapy and painkillers almost completely handle any leftover damage.
There's just one problem: Humira costs over $1000 a dose, you have to take it two to four times a month, and you have to take it for life. Stop for a few months at any time, and the symptoms reappear, in fact they seem to bloom like alga in the Arctic summer. And AS is progressive. If I go for ten years without Humira, I'm probably looking at some permanent damage to the spine, and damage to the eye[s] that will require delicate surgery to repair if it can be repaired at all. I submit that few people can afford to pay out of pocket for Humira and I'm included; no health insurance, no wonder drug. In this choppy job market full or contract work, stints of unemployment, temp agencies, and three month waiting periods for benefits, that means I go without it all the time lately.
The manufacturer does have a damn generous program that will dispense the drug for free. But it has to be prescribed by a rheumatologist. Rheumy's, as they're called by autoimmune sufferers, aren't cheap. Many won't even see you if you don't have comprehensive insurance. It took me a four month wait earlier this year to get into see one of the few nearby who will. Rheumy's are always wanting to do tests. TB tests, sed rate tests, liver function tests, heart tests, which can run anywhere from tens of dollars to thousands of dollars out of pocket. They also require you to have a regular eye doctor for the eye complications and a general practice physician for other things. What that all boils down to is hundreds of dollars a month, multiple doctor appointments, delay after delay and time of from work again and again, and the occasional showdown or constant bickering with your various docs over tests you can't afford, to get the rheumy to prescribe 'free' Humira. In some cities there are free health clinics or adjustable rate clinics where you can see all the docs at once, but thanks to Bush's economic prowess, the two in my city have a mountain of paper work and a waiting list four months long to get in. They're not even taking names for the waiting list to get on the waiting list anymore.
AS is one of many, many conditions that could be a poster child for the healthcare debate. Almost completely controllable with treatment, hideously painful and disfiguring without it. With health insurance it still costs a copay of 50 to a 100 bucks for Humira. But that I can swing whereas $2000.00 a month would eventually break me. Right now I have no real insurance. I'm on a treadmill, with a catch-22: seeking to get a real job and stay healthy long enough with at best spotty treatment to last long enough, to get comprehensive employer sponsored health insurance to stay fully healthy by getting regular meds. The kind of insurance most everyone in America working for the S & P 500 takes for granted, the kind that has been terribly hard for me and millions of others to find for two years now, the kind the GOP is promising to repeal.
Since I got laid off in 2008, I limp buy, dipping into dwindling savings, working contract temp jobs that never quite cover the endless doctors and tests needed to get eye drops, or painkillers, or even an occasional free sample of Humira. I never know when it will flare up really bad and put me down, or leave me with one functioning eye for a month. And sooner or later both eyes will get it at once, at which point, if I don't have a real job with real benefits, I could well end up on Medicaid and/or SSDI just to get basic, non-biologic drugs that have existed for a century and costs pennies a dose.
Once the Humira starts working, usually after two doses, the maintenance dosage can be lowered. So, just like a senior citizen on Medicare, I've learned the ropes when it comes to stretching it out. The syringes are preloaded and fired with a spring, once activated it all squirts out. But you can collect it in a shot glass and draw it up into two or three smaller doses ... provided you are careful about storing it, and sanitary, and provided you are willing to find a pharmacy that will sell you intramuscular needles, or a friend with access to them. A practice that is borderline illegal, and has already resulted in one friend thinking I was a closet IV drug addict.
She's not far off actually, I do indeed have a drug problem: I am physically dependent on a substance that is prohibitively expensive, hard to obtain, and that's only available from a handful of sources in larger cities. An inordinate amount of time and money is dedicated to procuring it. I live with some fear, on a sort of roller coaster, that I will run out and the cramps and fiery flaring points of pain will dominate my day. This isn't academic; I do run out and that's exactly what happens. When it's available, Humria doesn't get me high, just like a full blown drug addict all it does is help me feel normal. And if I'm caught with the paraphernalia necessary to help maintain my habit, for lack of a better word, I could be arrested, have my home or car seized, and potentially go to jail. That's exactly what went through my mind that night a few years ago during what would come to be called The Raid.
That same year a guy had been arrested in my state with a prescription of hydrocodone. They were in his name, from a legit doc for a legit reason, and a bunch were left after several weeks. IOW, no evidence he had been abusing them or selling them. Nevertheless, the local DA decided to try out a new law that said if a suspect has legally prescribed medicine and the authorities have "reason to believe" that suspect has the 'intent' to distribute it in the future, he can be tried just like a crack dealer busted on COPS. Under that same insane law, the jury isn't even allowed to hear that the drug was legally prescribed. This is a law that turns anyone walking out of a pharmacy into a felon on the arbitrary whim of any police officer. This poor man had been convicted on the charges, and already spent two years in a shitty state prison/work camp before the conviction was over-turned to the tune of tens of thousands of dollars. He got out of jail -- homeless and stone cold broke.
I remember, during The Raid, walking into the break room that over looked the parking lot to take a look see. Only to find the normally well lit lunch room pitch dark, even the vending machines had been unplugged. A half-dozen silhouettes crouching in front of the second story window turned menacingly and hissed, "Close the door!". They were spying on the parking lot below, where several of our agents were being frisked, and one was in cuffs sobbing. I watched as a tow truck rolled up to seize the car of the offender, a 21 year-old single mom who had been caught with half a ten milligram Valium in her purse. Most of our agents were female, and by the time I went back to the call floor, a line had formed down the hall to the ladies room. The constant low roar of toilets could be heard through the thin walls, as panicked employees earning a whopping nine dollars an hour flushed away anything that could be remotely considered an illicit substance.
At which point grandma approached me with a pill organizer the size of a Gutenberg Bible, chock full of sedatives and muscle relaxers and painkillers, to manage her and her husband's menagerie of diseases. Fear in her eyes man, fear in her eyes. She was a recently retired black school teacher from Atlanta, and she knew exactly how this could go down. As luck would have it, she and I walked out of there and made it home that night without losing property or freedom. But walking past a squad of flinty-eyed, well armed police carrying anything that could be misconstrued was unnerving as hell.
Our nation has a serious drug problem alright. But it's a lot, lot bigger than recreational drug abuse.
Word soon got out the parking lot was hot. No one dared bring so much as an aspirin to work for days. By then the police had milked our employees for everything they could and moved on to greener pastures. A few days after that someone's car was broken into in broad daylight. Employees grumbled and worried that they might be next. But this time, no one was stupid enough to complain to management.