Living with Scleroderma

Reflections on the Messy Complexity of Chronicity

Medicare Part D

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

Dispatch from Medicare Part D

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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