I see myself in some virtual Kafka novel.
“I see myself in some virtual Kafka novel.” Illustration from Kafka’s “Give It Up” by Peter Kuper / Flickr / Creative Commons.
January 10 4:53 p.m.
Today I found myself suddenly unable to afford Jim’s basic medications.
Rasagiline went from $24.38 to $716.00
Myrbetriq from $16.50 to $524
Rytary from $16.00 to $473
Namzaric from $19.68 to $209.50
And the other six medications he needs to preserve life and a modicum of well being at least doubled.
I spent three hours on the phone with drug companies, insurance companies, physicians and got everything from “there’s not much else out there” to “separate into its components” to “we’ll send you paperwork so you can apply to foundations” to “request a tier modification to (my personal favorite) “you were paying too little last month.”
Blindsided, frustrated, furious, powerless, I post to Facebook. Three days later I have 50 shares, 111 reactions, groups of See More comments – more than any film, any political revelation, any death or celebration I’ve posted in the past. There’s something worrisome about misery finding such a response. I puzzle through the comments.
It’s not the first time in my life I feel like an idiot. Apparently Medicare recipients (a quarter of us older than 80) are supposed to find some kind of way to match and compare different companies with the specific drugs they need — every single year. I have never done that for Jim.
Maybe it’s because I generally hate shopping. I only enjoy places where there are good samples so I can eat (and drink) my way through the store. Somehow I can’t imagine free samples of Myrbetriq as particularly pleasurable. One could stop peeing altogether. Although… maybe I just assumed that once a prescription was authorized by a doctor and approved under Jim’s insurance plan, our cost would remain the same. I have no idea where that assumption came from. I guess I was caught in Gramsci’s trap of hegemonic denial.
I visualize a million patients dragging IVs in hospital gowns mooning CVS
under a banner drop.
Otherwise, why would I think there would be consistency under capitalism — perhaps the most irrational system in history? Actually that would be a great and contradictory reform slogan: “We Demand Consistency under Capitalism.” I visualize a million patients dragging IVs in hospital gowns mooning CVS under a banner drop.
Did you ever think of pharmaceutical companies as pushers (with doctors in sometimes unwilling support) and insurance companies/drugstores (in my case they are the same) as dealers? I think about an experimental documentary with a split screen. On one side we see the pharmaceutical company, insurance agent, drugstore owner. The other (split screen) is the meth lab chemist from Breaking Bad, pusher, street level dealer. See, we have free samples (the manufacturer) we give to the pusher/doctor until you’re hooked/we’ve established efficacy and then we jack up the price. “God damn the pusher man,” I think. Steppenwolf plays music for the imagined film.
I’m making my usual rounds at the CVS at Oltorf and Congress in Austin. The refill for Jim’s only cognitive medication, a combination drug named Namzaric has come in. I’m told that it will cost over $200 co-pay.
Embarrassing myself as well as the pharmacist, I burst into tears.
I ask about his basic Parkinson’s medication, Rytary, just the same Levadopa Carbidopa that’s been used for the last 40 years, only delivered so that it’s smoother and there are fewer side effects. It’s “hot” in Parkinson’s treatment. That will be $473 a month. Embarrassing myself as well as the pharmacist, I burst into tears.
Impax Laboratories, the manufacturer of Rytary, listed on the NASDAQ Stock Market under the symbol “IPXL” is worth $1.7 billion. IPXL? Illuminati, I think. Black helicopters. They offer MyRytary to help people pay for the drug valued at over $1,000 a month at the dosage Jim needs. We started with a generous sample from his neurologist. Then another month free voucher from MyRytary. The website says, “You’re not alone on your treatment journey/Steve diagnosed in 2008. Shooting straight. Scoring eagles.” (Steve’s a photographer just in case you thought the example was illegal. Corporate punning I guess.)
You get up to three months supply free of charge while IPXL helps you figure out how to pay for their drug. After that, here’s the basic deal. If you have private/commercial insurance they make sure you pay no more than $25 a month, by strong-arming the insurance company I suppose. But if you’re on Medicare or Medicaid, they offer “Foundation Referral.”
The case manager at MyRytary tells me that I will receive applications to three-to-five private foundations in the mail. Who, I ask myself, might those foundations be? The Michael J. Fox Foundation? The Parkinson’s Foundation? We’re (very minor) contributors. So the foundation pays a drug company with the money they get from people with the disease so those people can buy drugs from the drug company.
Many of the comments after my Facebook post are kind and supportive.
Many of the comments after my Facebook post are kind and supportive. “What can we do to help,” “I’m sorry,” “This has got to change,” “This is obscene and terrifying,” “Call me.” There are expressions of incredulity. “Is he covered by Medicare, does he have supplemental…”
Jim has Part D coverage through SilverScript. Something strange happens while I’m on that first phone call to the insurance company after the event at CVS Pharmacy. Every time I ask a question like “Why did the price for Rasagiline jump that way?” I’m put on hold for at least 20 minutes (nothing strange there). But when the new person introduces themself as CVS Health, I say, “I’m confused. I thought I was calling the insurance company SilverScript, not my pharmacy.” “Oh,” they say, “We just call ourselves CVS.”
“SilverScript. SilverScript PDP Plans. America’s largest Medicare Part D insurer. CVS Health is dedicated to improving quality of life for all Americans. As a proud member of the CVS Health family of companies, SilverScript (PDP) shares that commitment by offering affordable, high quality coverage to over 5 million people… As an insurer chosen to help launch the Medicare Part D program in 2006, SilverScript has grown to become America’s largest stand-alone Medicare Part D insurer.”
I see myself in some virtual Kafka novel.
As I remain on hold waiting for the next in the chain of command at SilverScript, in that idle time when there sometimes isn’t music but just silence and the command “Wait” at regular interviews, I see myself in some virtual Kafka novel. Bureaucracy, I think, an institution that only works to baffle us and perpetuate itself. Marx writes of its characteristics: hierarchy and secrecy. I think, some kind of Nazi Gleichschaltung of formality, conformity, and paperwork. Even the language of Medicare Part D is designed to stupefy.
I tell the first person on the phone at SilverScript to please speak to me as a normal human being — that I can’t understand her. What do you mean by the formulary? What’s a non-formulary? She says, “It’s the formula, do you not understand the word formula.” SilverScript provides a glossary of medicare terms neatly divided by starting letters, but formulary is not part of the list.
“Formularies are developed to meet the needs of most members based on the most commonly prescribed drugs, including certain prescription drugs that Medicare requires that we cover.” But this can change at any time throughout the year if “the plan no longer covers a drug or it gets moved to a different cost-sharing Tier or…” Just click on our Drug Pricing Quote and then enter your ZIP Code. Enter the drug name(s). Select the drug form strength, and dosage.
I see Quote 74049-78566 Password: p01-13-18, outlined in categories,
tiers, stages…
Upon the screen I see Quote 74049-78566 Password: p01-13-18, outlined in categories, tiers, stages (including the gap — when the gap gets above $5,000 you enter catastrophic and it goes down some depending on the drug). The total cost for us for 2018 beginning in February is $17,171.18.
A little later I get an email from Caremark. (I wonder why they didn’t capitalize some random letter in the middle? Why mark and not mart?) “Good News!” they say. “We saved your drug quote. Tip: Not sure what to do next? Just follow the simple step-by-step instructions on each page.”
The woman on the phone from CVS Health AKA SilverScript begins to suggest drug substitutions. She’s dangerous. Jim takes a drug called Namzaric — a combination of two drugs — Menantine and Donepezil. (It’s like a Russian novel with these names multiplied and unpronounceable but with no insight or pleasure.) “A replacement that would only be a few dollars a month is called Donepezil. Would you like me to spell that?” she says. Oh great, I think. He’ll lose only half of his children’s names.
‘Would you like me to spell that?’ she says.
The comments on Facebook go beyond sorrow and support for my fortitude. There’s my old friend from Kentucky who lost a family fortune paying for drugs for his dying wife; a woman whose mother ended up borrowing meds from a church friend who didn’t take them; a woman who almost bled out when they raised the cost of her clotting medication to $1,600 she didn’t have; a Huntington’s patient who has become a human guinea pig for drug companies in exchange for free drugs; a friend’s co-worker whose insurance company decided that it wasn’t time for her to get more insulin; people on HIV medication barely keeping the virus in check month-to-month, risking all at the whims of some bureaucrat or foundation funder.
Other comments suggest that becoming a U.S. health care refugee might be an option — or at least buying drugs from Canada or Mexico. There are practical suggestions with numbers to call. None quite work. Then there’s the locally-owned pharmacy that didn’t take insurance but was reasonable and other ways to get discounted drugs. Still waiting for call-backs from four different doctors.
I think, when you go shopping for drugs (in Canada, Mexico, at Walmart, with coupons, with the fragmentary specialized care that’s the rule in this country, it’s like stirring together a chemical goulash without a recipe. Jim has six different doctors all prescribing different things. There are some really bad drug interactions that come with his diagnosis.
I think I’ve become a witch but without the ability to predict outcome.
Every new drug needs research, some of which is only available in pharmaceutical software. Bubble bubble toil and trouble, I think I’ve become a witch but without the ability to predict outcome.
Many of my friends express outrage at the situation and want to understand. I’m so far in the weeds, I can’t find any single answer. Is it a desired drug that the pharmaceutical companies can overcharge for? One of the drugs is just the delivery system. Another is a combination. Both are important to the person taking them but didn’t involve any research or development on the part of the company. Is it a less desired drug that they hope to discontinue even though it’s the only one out there that works for a specific group of people? Is it the drug manufacturers, the doctors, the insurance companies, the delivery system?
Then there’s a post that says, “The intent is to leave you broken and penniless before you die. You can’t take it with you and you can’t be leaving anything for your widow or heirs either. It’s gotta go in their pockets.” He goes on, “At age 59, I am dedicated to the notion that if I ever need a prescription to survive, I’ll seek a natural substitute or go without.” I think, my life is existential enough without going there. It’s sure different when you’re figuring this out for someone other than yourself.
More political friends suggest nothing
short of revolution.
More political friends suggest nothing short of revolution. Others quarrel back and forth about Republicans and Democrats, about Medicare for All and Health Care for All. I write, “How about a nationalized health care system that includes the entire care and delivery system? Insurance companies out of business. A unionized work force at all levels. Foundations replaced by nationally-funded research and development. And consumer unions kind of like the bus drivers and riders in Atlanta. Is there a way to create community between producers and users or are we too far gone?”
I’m writing this stuff while on hold or waiting for callbacks. I get no response from my Facebook friends. On second thought, I agree with them. If I’m going to name a list of solutions, it’s kind of meaningless without any mention of the way forward. One already wrote, “When’s the sit-down?” That call to organize sounds better, but I’m at a loss.
January 13 11:38 p.m.
Earlier today I filled Jim’s pillboxes for the next week, four compartments each day, some with as many as nine different pills. He looks at them and asks me why the 7 p.m. for next Saturday is empty. “I’m out of some stuff and don’t want to get confused. I’ll take care of it next week,” I say. He says, “Tomorrow is another night.”
I think about the pharmaceutical companies, the insurance companies, the drugstores. I say to myself, “I fart in your general direction. Your mother is a hampster, and your father smells of old elderberries,” as if prescription drugs had something in common with the Holy Grail.
[Anne Lewis is a documentary filmmaker whose films include: On Our Own Land (DuPont-Columbia award), Justice in the Coalfields (Gold Plaque, Intercom), and Morristown: in the air and sun about factory job loss and the rights of immigrants. She serves on the executive board of the Texas State Employees Union TSEU-CWA 6186.]
- Read more articles by and about Anne Lewis at The Rag Blog.
Well it’s about year later and here we go again. My yearly New Year’s present seems to be denial of insurance for medication. We’re 1 day from out of Rytary and it’s $1,200 for a month’s supply. (Rytary kind of works.) We have funding from the Parkinson’s Foundation but the coupon is no good without Medicaid Part D and it’s not on the formulary. Our insurance chips in about $30. Finally, just before CVS closes, I’m told by the nice young man (I can see him in my mind) that I should call my insurance company to find an alternative. I say to him, I am calling my insurance company. He says, well we are CVS brand but… I say, I think I’ll just let him die and sue the hell out of you. I can hear the dismay. Oh m’am, don’t do that. Would you like to speak to my pharmacist? Oh well, tomorrow’s a new day and maybe I’ll hold it together a little better.
Oh, no, Anne. This is so awful. I don’t know what to say. I wish I had advice to give, but I don’t. It is a helpless feeling.