- Dwight Sipler/Wikimedia Commons
- The dreaded kale
In early August my family and some good friends celebrated my 70th birthday in fine fashion at our place in Michigan. I’ll remember that afternoon a long time, and also the niggling detail that a few days before the party, and then again a few days afterward, I’d had to check into the hospital.
The reason for each visit was the same. As readers of Romenesko and Sneed know by now (is there anyone who doesn’t read at least one of them?), I have issues with my liver serious enough for my doctors to want to trade it in for a new one. The condition, which I won’t waste your time discussing, is called primary sclerosing cholangitis, an inflammation of the bile ducts. When it shows up accompanied by cancer, as happened with Walter Payton, death is probably imminent. Mine didn’t, and I’ve been living with PSC since it was diagnosed in 2001. Little by little it’s whittled me down to size. Recently it denied my body the ability to provide itself with vitamin K.
Vitamin K abounds in green vegetables, and most people have plenty of it. Just before my birthday the doctors told me I didn’t. Without vitamin K blood does not coagulate—a serious matter (ask a Romanov). Vitamin K is measured by something called an INR (for international normalized ratio), and an INR of 1 is good to have. Mine was up to 7. So the doctors at Northwestern brought me in, gave me a vitamin K pill, put me to bed, gave me another pill in the morning, and sent me home. My hepatologist told me to start taking vitamin K pills. But the pills aren’t cheap—I was told a bottle of 30 would cost around $340. My family, who had noticed I was looking a little jaundiced, decided there was a better way to go. They did some research and discovered that kale is teeming with vitamin K. Chard is right up there too. So I started having kale with everything, as well as tearing off leaves and eating it raw.
I discovered I don’t like kale very much. And I continued to look more yellow than pink. My family did more research and discovered kale unleashes its healing wonders best when cooked. So kale sandwiches were out and kale with pasta and kale omelets were in. I still didn’t like kale very much. But then it turned out parsley is almost as good a source of K when eaten raw! I like a little parsley on my tabbouleh and mushrooms grilled Spanish style, so this was good news—if it worked as a garnish it might be pretty tasty consumed in hearty mouthfuls. It isn’t.
I stuck with it, however, even sneaking away from my own party from time to time to gulp down a mouthful of parsley. And then Northwestern tested my blood again and said my INR was up to 8.6.
There’s a complicated algorithm that doctors use to predict lifespan in liver patients, and the INR is one of three numbers that factor into it. If my new and inflated INR was to be believed, more likely than not I wouldn’t last another three months. But they gave me a vitamin K pill at the hospital and it immediately went back to 1.
That was good news. Even better was recognizing that I could put kale and parsley behind me. All I needed was to do what the doctor wanted me to do in the first place: take a five-milligram vitamin K pill every other day.
Now, gratefully, I digress. People who talk about nothing but their health bore me, and I’m boring myself talking about my own. So let me pause here to speak directly to President Obama. Sir, I know launching Obamacare has so far been a fiasco, but don’t lose heart. The public will come around. Americans will learn to love any health care system no matter how slapdash it is, so long as it saves them a few bucks and gives them a piece of plastic they can slap down forcefully at the admissions desk. I know this because everything that’s being said about Obamacare was once said about Medicare—and old folks love Medicare.
I guess I love Medicare—because this liver transplant thing would wipe me out if I didn’t have it. But I want to assure you, Mr. President, Medicare is such a ramshackle contraption, Obamacare has a ways to go to come anywhere close.
To begin with, Medicare is four programs, not one. There’s Medicare A and B, and also Medicare D, the drug plan, and Medicare F, the supplemental plan. That means three cards in my wallet, not one, and three different insurers I need to deal with individually.
They like to write letters, so it’s important to read my mail. The news is never good: “Effective January 1, the deductibles and coinsurance amounts for Medicare Part A and B will increase. Based on these charges, Blue Cross and Blue Shield of Illinois will automatically adjust its coverage . . . “
And: “We are writing to inform you of a change in your Health Alliance Medicare drug coverage. . . . We are telling you about the change now so you and your doctor have time to decide what to do. The following drugs might work just as well and keep costs low for you. . . “
Or they might not. I bet doctors love to get these calls, asking them to look up drugs they don’t prescribe and phone in new prescriptions.
Fortunately, vitamin K will never be a party to this bait and switch. That’s because Medicare doesn’t cover vitamin K at all.
Why should it? I can buy a bottle of 100 vitamin K tablets at GNC for a little over three dollars. Won’t that do me? The thing is, those OTC tablets each contain 100 micrograms of K. A microgram is one-thousandth of a milligram. Vitamin K in prescription form is also known as Mephyton, and my prescription is for five-milligram tablets. That’s 5,000 micrograms. If I didn’t mind stuffing myself with the inert ingredients dicalcium phosphate and cellulose, I could get my prescribed dose by consuming half a bottle of GNC vitamin K—50 tablets—every other day. Maybe that’s what I should do.
But so far I’ve gone the prescription route. In August, when I filled the prescription the first time at my local CVS, it had to be specially ordered because it was so rare it wasn’t in stock, and a supply of 30 didn’t cost $340—it was $361.17. I was told this was a pretty sweet price because CVS had set me up with some sort of proprietary discount. When I returned for more pills two months later, I was charged $416.14. I was told discounts change.
That’s when I got busy trying to figure out the laws that gave us Medicare. They run to hundreds or probably thousands of pages, but here’s what I teased out: “nonprescription drugs,” with few exceptions, “may be excluded from coverage.” So may “prescription vitamins,” for no reason I can see other than that you theoretically can buy them without prescriptions.
But my research led to a breakthrough. At Medicare.gov, “the Official U.S. Government Site for Medicare,” I read that Medicare Part B “covers a limited number of outpatient prescription drugs under limited conditions.” And these drugs included—”Blood clotting factors: If you have hemophilia, Medicare helps pay for clotting factors you give yourself by injection.”
OK, I didn’t exactly have hemophilia, and I wasn’t injecting vitamin K; but Mephyton is a clotting factor and I needed it to stay alive and I was clearly covered by the spirit of the law if not the letter. There is actually a Medicare ombudsman whose job, I assume, is to advocate for people like me. But the ombudsman is impossible to get on the phone. You have to work your way up the ladder. I’d advanced a few rungs to an “advance resolution center specialist” and was still waiting for a callback from the actual ombudsman when I ran out of Mephyton pills again.
My advance resolution center specialist (or ARCS) was a lovely woman, by the way. She was willing to hear me out all afternoon on the pivotal question of whether “may be excluded” should be interpreted to mean “must be excluded” or to mean “if the insurer wants to stick it up the insuree’s ass he’s got Washington’s permission.” But to the question of whether I could find coverage—under either B or D—all she could say was it’s a pity. Whether the actual ombudsman would lift a finger on my behalf is something I’m still waiting to find out.
But then another breakthrough! I heard some very good things about a website, goodrx.com, that offers coupons for all sorts of drugs. I went there and typed in Mephyton. Up popped two coupons—one from GoodRx that offered 15 tablets for the “discounted price” of $170; the other from HelpRx.info that called itself a “prescription savings voucher” and boasted, “Save Up to 85% on Mephyton.”
Armed with these coupons, I headed to my local CVS Monday afternoon. A pharmacist handed me the envelope with my pills. I noticed that with the proprietary discount the price had gone up again, to $476.82. I passed over the coupons and told him to pick out whichever one offered the biggest savings. Processing the coupons took some time on the phone and when the pharmacist returned he gave me interesting news. Even with the coupons, buying Mephyton under these plans would run me well over $500.
What about this coupon that clearly says, “Discounted price . . . $170”? He studied the paper and pointed to small print that said, “This is your estimated price at CVS Pharmacy #04189 at 2828 N Clark St.” Maybe that CVS is cheaper than we are, he said, but they might not have it in stock. I asked him to call over and find out if they did or didn’t and what it would cost me. He reported back that they didn’t but could have it by tomorrow and it would cost me $511.
Well, then, I said, I guess I’ll just buy it here.
There is something you need to understand about people as sick as I apparently am. We need distractions. We need petty wars we can march off to that take our minds off the big campaign that in the end no one wins. As absurd as I had discovered the rules and regulations of Medicare to be, I took comfort in the absurdities. It was sort of fun trying to get the Medicare ombudsman on the line and getting nowhere. And I needed to laugh.
Up to a point, I could even laugh at CVS.
A clerk ran my credit card through her machine, and as I was signing the transaction terminal with the attached stylus I noticed the price.
$504.
What is this? I said. When I came in here it was $476.
The clerk summoned the pharmacist, who explained. The original price had been determined a couple days earlier when I called in the refill and they bagged my order for pickup. But when they processed my coupons they found out what the latest price was, so that’s what they had to charge me.
You mean to say, I replied after thinking this over, because I tried to save a few bucks with a coupon I wind up paying another 30 bucks?
That’s right, he said.
Which I wouldn’t have had to pay if I’d skipped the coupons and just paid the price on the paper bag?
Right, he said.
I’m not one to use profanity in a crowded store, as a line is forming behind me, but I was no longer laughing to myself. This was not just ridiculous; it felt crooked. I got surly. He said he’d see what he could do. I stayed surly. He got on the phone with the CVS proprietary drug plan and when he was done he said he’d been able to knock the price back to $476.82. But when the clerk handed me the bag I told her, “I’m going to write about this.”
Was it a silly episode I should shrug off, or a look into the injustice of American health care? Is it what happens to people every day who don’t have a drug plan and are defenseless against predatory pricing; the people you read about who cut pills in two so they’ll go further and who skip doses? Is this what they go through every time a doctor writes a prescription? I guess the message is, let them eat kale.