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Reflections on the Messy Complexity of Chronicity

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managing medications

Dispatch from Medicare Part D

Evelyn Herwitz · October 2, 2019 · 2 Comments

I’m posting on Wednesday, a day late (hopefully, not a dollar short), because Monday and Tuesday were Rosh Hashanah, and in the run-up to the Jewish New Year and a lot of cooking for company, I ran out of time to write a post for my normal Tuesday morning blog schedule. In the midst of all that, however, I was also in the midst of a struggle with my Medicare Part D insurance company about a medication I’ve been on for decades. Fortunately, it has a happy ending, but it’s also a case study in the need to be your own health care advocate . . .

For decades, I’ve been taking Evoxac (generic name is Cevimeline) to help me compensate for dry mouth due to Sjogren’s Syndrome, a not-uncommon autoimmune companion to scleroderma. This has always been routinely covered by any employer-based health insurance plan, usually for about a $10 co-pay for 90 pills. Under our previous coverage, I’d received bulk orders, but my supply and refills had finally run out. When I saw my rheumatologist at Boston Medical a couple of Fridays ago, I asked him to call in a prescription to the Walgreens I now use under my new Medicare Part D plan.

Within an hour, I received a text that the pharmacy was out of stock for that med, but would order a supply for me. Fine. I still had enough pills for several days. By Tuesday, however, I’d not received any word about the prescription’s status, so I called Walgreens. Lo and behold, the problem wasn’t just a matter of inventory; my Cigna plan had turned down the request because Cevimeline is not in their formulary. If I wanted to fill it without coverage, the price tag was over $500.

What??? First of all, why hadn’t I received a text about the rejected coverage? And more importantly, when I surveyed Part D plans last spring, I had reviewed all my meds, and this one was definitely on the list of covered drugs. I know formularies can be changed without notice, one of the more outrageous issues with our health care system, but it had never happened to me before. My next step was to research Cevimeline via Canada, at a more affordable price. Not available, to my dismay.

So I called Cigna. Now, I must admit, the customer service people were polite and very helpful. Not what I expected. I was forwarded to their coverage unit and learned I needed to apply for a coverage appeal. It would take 72 hours, once they received documentation from my rheumatologist that I needed this medication. But, wait, I explained, I now have no pills left. So the service rep put my request on 24 hour turnaround. So far, so good.

Next step: Follow up with my doc’s office to be sure they sent the needed info ASAP. Forget messaging through MyChart. That would take too long. So I called. But here’s where new systems of consolidated call centers at health care providers comes into play. Although I was able to confirm that Cigna had faxed their info request, I could not get through to my doctor or the nurse I know who handles refills and pre-authorization requests. I simply could not get past the gatekeeper customer service rep at Boston Medical. He was pleasant enough, but had no power to do anything other than try to reach the nurse and, when she didn’t answer, leave a message and put a note in my electronic file that I was out of pills.

This was not going to suffice. No point arguing with him. Instead, as soon as I hung up, I emailed my rheumatologist directly (I’ve had his email for years) and the nurse (who has always helped me in the past), explained the situation, and waited for a response. By late that afternoon, the nurse responded that she’d called Cigna and my case was “in process.” Great, I thought.

But no word from Walgreens by the next day. So I called Cigna again Wednesday morning. Sure enough, case “in process” meant they had just sent the info request, but not heard back from Boston Medical. So I emailed the nurse again with what I’d learned. She got on the phone within hours and sent them what they needed. Thursday morning, first thing, I received a call from Cigna that the prescription had been approved.

Now the question remained: how much would this cost? The other part of my dilemma with Part D now is that I have landed in the infamous “donut hole,” which essentially means I’ve exhausted my insurance’s more generous contribution to my meds and now must pay about 25 percent of the cost, which is a lot with most of my meds, until I pay something like $5,000 out-of-pocket. Turns out the high price I was quoted by Walgreens was for a three-month supply. With the approval, the cost was significantly reduced, but there was a confusing price range.

So on Friday, I went to Walgreens, to be sure that the prescription would go through, and to find out the cost. It did go through, thank goodness. First cost I was quoted: about $150. Was this for one or three months? Three months. Okay, so how much for one month? Just under $30. Hmmm. There’s a big math error somewhere, but the under $30 price suited me fine. Again, they were out of stock. As of Monday afternoon, I got a text that my prescription was filled and ready for pick-up. And that’s just what I’m going to do after I finish this post.

Moral of the story: Never let an outrageous drug price quote stop you from advocating for what you need. And be sure to get private emails from your trusted health care providers. (As a side note, after I ran into a similar call center roadblock with reaching my cardiologist a few months ago, I told him about it at my last appointment, and he gave me his personal secretary’s contact info.) Persistence pays.

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: Mathew Schwartz

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Filed Under: Body, Hearing, Mind Tagged With: managing chronic disease, managing medications, Medicare Part D, resilience

Pharmacopia

Evelyn Herwitz · February 11, 2014 · 2 Comments

Lately, it seems, I’m running to the vet or the pharmacy every week or so to refill a prescription.

Ginger, our 15-and-a-half-year-old Golden Retriever, needs a steady supply of her chewable, yummy, liver-flavored pills for arthritis, plus her chewable, yummy, other-flavor pills to help her cognition (I could use some of these, too, for those ever-more-frequent senior moments), and another pill for her thyroid, and another med for her arthritis (which I just discovered comes in pill form, not yummy or chewable, but considerably cheaper than the liquid version), plus a stomach acid blocker.

For me, there are about a half-dozen prescriptions to manage at any one time, one from a specialty mail-order pharmacy that requires a monthly blood test, and others that run out on a staggered schedule and require my attention every couple of weeks or so. Plus some vitamin supplements and over-the-counter meds to round out the mix.

I’m sure there’s a more efficient way to keep track of all this and probably some cheaper alternatives for Ginger that I have yet to discover.

I need to check out substitutions for some of my own meds, as well. Recently my deductible on two different scrips jumped from $25 to $50. One of these is a monthly refill. It all adds up, quickly.

Even still, I’m blessed with good medical insurance through Al’s employer (at least, that is, until we find out what the new plan will be for next year, since the hospital where he is a social worker was recently bought out, once again). One of my prescriptions would cost nearly $5,000 a month without coverage. Very sobering. I think about this every time I take one of those little pills, which I need twice a day. I try to be very careful not to drop one.

When I rise and before bed, I line up one set of pills and swallow them with water. Then, after breakfast and dinner, Ginger and I take pills together. Despite her age, she is actually very good about reminding me if I get distracted, because for her, medicine is a big treat.

Not only are the chewables yummy, but she enjoys having her other pills with a little butter, plus a scoop of low-fat ricotta and a little bread or left-over challah, to be sure the arthritis meds don’t irritate her stomach. She will start pacing back and forth to nudge me if I miss the timing, which she seems to know by the amount of daylight or lack, thereof, and where we are in our daily routine of meals.

I do not look forward to taking my meds, nor to constantly running to refill prescriptions, nor to paying for it all. It is just one of those things that needs to happen on schedule.

But I think Ginger has the right attitude. In her world, every day is an adventure to be savored.

My meds certainly help me feel a lot better than I would without them. They are a nuisance to manage, a growing expense. But I am extremely grateful to have access to the drugs I need in order to stay as healthy as possible.

Now, if they could only come in chewable, yummy flavors.

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.

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Filed Under: Body, Mind, Sight, Taste Tagged With: body-mind balance, managing chronic disease, managing medications, resilience

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About the Writer

When not writing about living fully with chronic health challenges, Evelyn Herwitz helps her marketing clients tell great stories about their good works. She would love to win a MacArthur grant and write fiction all day. Read More…

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I am not a doctor . . .

. . . and don’t play one on TV. While I strive for accuracy based on my 40-plus years of living with scleroderma, none of what I write should be taken as medical advice for your specific condition.

Scleroderma manifests uniquely in each individual. Please seek expert medical care. You’ll find websites with links to medical professionals in Resources.

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