Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Hearing

Snake Eyes

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This is not a novel observation, but getting prescriptions filled for a reasonable cost in the U.S. is a crap shoot.

I just spent an hour on the phone with my Medicare Part D insurance company, trying to get prior authorization for a medication I need to refill every other month, but which is not covered by my plan. This, after first calling my pharmacy to find out why they kept sending me messages about an “insurance issue” with the prescription and then being told that they had not yet submitted the scrip and would only know details when it was filled. Now, none of that made sense, because in my app for the pharmacy, I could see the price—nearly $700.

But I need to back up. Because I have for the past several years very successfully been able to fill this scrip and one other very expensive medication via a Canadian online pharmacy in British Columbia. Great service, much more reasonable pricing. That is, however, until last month, when I received a letter from the FDA informing me that my other very expensive medication refill had been impounded at the Port of Los Angeles after being flagged by U.S. Customs.

The reason? Since this medication was available in the U.S., but it was coming from Canada, its authenticity could not be confirmed. To “protect” me from consumer fraud, the FDA was going to destroy it. I wrote to the official who sent the letter, trying to get an exemption, but no luck. And this particular medication would cost in the four figures if filled by my approved local pharmacy.

What to do? Thankfully, my team at Boston Medical suggested an alternative: Marc Cuban Cost Plus Drugs. This is a legitimate, licensed drug wholesaler that fills prescriptions at cost plus a 15 percent markup. And fortunately, they carry my very expensive medication. Here’s the kicker: the price from Canada was $200 for a refill; with Marc Cuban, $10! It arrived within a week and it works just fine, thank you very much.

Unfortunately, they do not as yet carry my other expensive medication, the one for which I await prior authorization. Even with insurance, I’m expected it to be pricey. Maybe there is an alternative, to be discussed with my medical provider, given that we have to wait until 2025 for the new $2,000 cap on Medicare drug out-of-pocket expenses to go into effect. Which assumes that this important provision of the new Inflation Reduction Act doesn’t get killed before then, given all the craziness in Washington.

The system is just so convoluted. And clearly, from the wholesale price for my very expensive medication, Big Pharma is just making a killing. (No news there.) Plus, who really has time or patience to dig for all the information needed to pursue prior authorization? I’m fortunate that I can take care of this for myself, that I own my own schedule at this point in my life, and we can afford the medications we need. Not so for too many others.

And so, after the hour on the phone with the prior authorization department at my Part D insurer, writing an email to my provider to let her know about the form they faxxed, and getting a voice mail from my Part D insurance telling my original request to fill the scrip was turned down (yes, I figured that out already), it’s a waiting game. Fingers crossed . . .

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: David Clode

The Year That Was

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When I was in elementary school, my parents loved watching a TV program on NBC called That Was the Week That Was. Biting political satire was TW3’s forté, and nothing was off limits, from abhorent civil rights murders in Mississippi* to Barry Goldwater’s 1964 presidential bid. Adapted from the BBC original, the US program ran from 1964-1965, and introduced host David Frost to American audiences in the second season. Among the regulars were Henry Morgan, Phyllis Newman, Alan Alda, and Nancy Ames. Tom Lehrer wrote some his most famous songs for the program, including Vatican Rag and National Brotherhood Week.

I was so inspired by the show that in the sixth grade, I convinced one of my friends to help me write a version of the TW3  theme song as “That Was the Year That Was” to present to our fellow classmates as an idea for a class play. Needless to say, it went over like a lead balloon, because none of the other kids had any idea what we were singing about. But I have to credit my teacher, who at least let us give it a try. And, fortunately, there was no backlash from parents over our left-leaning politics.

There’s no shortage of political satire on TV and the Internet today, certainly, but TW3 originated the genre, and I wonder what they would have made of 2022. Plenty of material to parody, from botched Covid messaging to outrageous candidates in the Midterms. I just wish today’s TV satirists would rely less on obscenities for laughs and more on the kind of wry, pointed political commentary that TW3 pioneered.

This past year has been laden with so many tragic events—brutal war, needless deaths from the pandemic, too many mass shootings (and by that I mean even one is too many, which we’ve far exceeded), over-the-top partisanship and division, devastating storms driven by climate change—that it sometimes feels hard to find something to laugh about. But we lose our sense of humor at our peril. To quote the ever-quotable Mark Twain, “The human race has only one really effective weapon and that is laughter.”

As we say goodbye to 2022 this weekend and welcome (perhaps with some trepidation after the last few years) what 2023 has in store, here’s hoping that whatever comes, we all find some good reasons to laugh at our very human foibles, make some time to be silly, and face truths worth contemplating at the heart of the joke.

* Some readers may find this YouTube clip offensive. I doubt if it would be allowed on TV today, risking backlash from both ends of the political spectrum. But the musical sketch was intended to shock, for obvious reasons that still sting the American psyche today—as well it should.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: “Men, possibly broadcasting technicians, seated in front of bank of television sets at the Democratic Headquarters at the Mayflower Hotel, Washington, D.C. on election night, November 3, 1964.” Library of Congress PPOC

By the Sea

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Last Friday marked our 38th wedding anniversary, and instead of the usual dinner out (often a challenge around the holidays) or maybe a concert or a show, we decided to escape for the weekend. I love discovering new places to visit, and we both love the ocean, so this time we ventured to the Connecticut shore, to Niantic, a coastal village within the town of East Lyme.

There we discovered a lovely boardwalk (actually, it’s made of concrete) along the shoreline, a park on a bluff overlooking Niantic Bay, and some great restaurants. Niantic Bay links the Niantic River to Long Island Sound, which (I never realized) is an estuary, an essential ecosystem where fresh water mingles with salt water and tides, providing a significant habitat for a bounty of marine creatures and birds. Along the beach we found many scallop shells, native to the bay, and even some sea glass.

Our inn overlooked a marina, which was a plus for Al, who always loves to check out harbors when we’re by the sea. The view was particularly beautiful at night, under a huge full moon. And a big local attraction was the Book Barn, which houses thousands of used books in many, many nooks and crannies. In fact, when I read about Niantic while researching options, that store was the clincher for me. We spent several hours there browsing and, of course, left with more books to read. (Next time, we’ll remember to clear some shelves and bring books to sell to the store, another benefit.)

On Saturday night, we walked a few blocks from the inn to see the annual Niantic Light Parade, a hometown holiday festival of festooned fire engines, local dance troupes in twinkling costumes, the high school marching band, and more. Pure Americana. See the photo of Kermit the Frog, below, along with some other favorite views.

Here’s to more adventures with my dear Al, and many more happy anniversaries to come!

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Do Not Use If Allergic

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I am one of those people who still watch the news on cable, rather than solely on social media, streaming services, and other internet sources. And because I still watch the news on cable, I am part of the aging demographic that is bombarded with ads from drug companies.

There are ads for diabetes drugs that lower your A1C level, ads for drugs that supposedly prolong your life if you have advanced cancer, ads for drugs to relieve symptoms of autoimmune diseases like Crohn’s, ads for drugs to help manage asthma, ad nauseum. Perhaps all these drugs have their place, and if so, I hope they actually do some good for those who need them.

But I find the ads ridiculous. Inevitably, as images of happy folks living wonderful lives in loving relationships flash across the screen, accompanied by up-beat music, the voice-over ends the sales pitch with a laundry list (because they must, under FDA regulations for marketing directly to patients) of all the dire side effects that could happen. Why would you want to take a drug to manage bipolar disorder, to name just one example, if it could potentially make you feel suicidal? Isn’t the cure worse than the medical condition?

Of all the required warnings, however, the one that strikes me as most inane cautions the viewer not to take Drug X if you’re allergic to it. So, how do you know if you’re allergic to Drug X if you’ve never taken it?

Apparently only in America—and in New Zealand, it turns out—can drug companies peddle prescription drugs directly to easy marks, excuse me, potential patients. How fortunate for us. I suppose the strategy is if you push brand recognition, a patient would, of course, ask her physician to prescribe the particular miracle cure. Unless, of course, she listened to that long list of negative side effects.

The goal of this information overload is undoubtedly truth in advertising. A good thing. But when we only hear a litany of side effects, absent the evidence-based, actual risk of having a particular bad reaction to the drug, the information is basically useless.

I have a better idea. Just cut all drug ads for good, like we did years ago for tobacco products. The money that goes into making and placing these ad campaigns only hikes the cost of prescription drugs for the people who actually need them. It’s high time for Big Pharma’s marketing strategy, priming patient demand to push their pills to physicians, to go the way of the Marlboro Man and ride off into the sunset.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Myriam Zilles

Hats Off

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It’s Election Day here in the U.S. I write this with some trepidation. There is so much misinformation, so much distrust, so much othering of each other. It is also an extremely important Midterm election, with a lot at stake.

But I’m not going to dive down that dark rabbit hole, where I’ve been spending all too much time of late. Instead, I want to express my gratitude to all of the citizens around this country who, despite some significant risks to their personal safety (a tragic and pathetic reality), are staffing election sites today. I have several friends here who are poll workers. They do an incredible public service.

From them, I’ve learned about the meticulous process of counting ballots, recording that data, sorting ballots by ward and precinct, and securely delivering the ballots to the City Clerk’s office. It’s a long, rigorous endeavor that takes many, many hours. To these civic-minded volunteers, I say a heartfelt thank you.

We have a lot to be grateful for in this country. It’s up to each and every one of us to make sure we participate by voting—and by respecting the election volunteers who give of their time and effort to ensure a fair and accurate count of those votes. Without their commitment, especially in times like these, we would be in dire straits, indeed.

Evelyn Herwitz blogs weekly about living fully with chronic disease, the inside of baseballs, turtles and frogs, J.S. Bach, the meaning of life and whatever else she happens to be thinking about at livingwithscleroderma.com. Please view Privacy Policy here.

Image: Elliott Stallion