terrorAn increasing number of U.S. patients are getting their powerful injectable and oral medicines sent to their home by specialty pharmacies. Putting the lack of "oral parity" laws aside and cost issues, there are breakdowns in communication that cause terror for seriously ill patients, and I am one of them. Here is my story:

In 2017, I became a Medicare patient when my wife's commercial plan (through an alumni association) was cancelled. I went from no co-pay for my $11,000 a month Jakafi for myelofibrosis to a $3,000 co-pay in January and then a 5 percent co-pay each month after that. That's the angst of Medicare Part D. Like many seniors (I still work) I have coverage through AARP's tie to the huge United Healthcare organization. Last week I was thrown into a tizzy when it became clear that United had dropped the ball.  I have heard whether it's with United or any other insurance company, this happens a lot, especially after January 1.

Here's what happened: Last week I called Express Script's Accredo Specialty Pharmacy to request refills of the two strengths of ruxolitinib (Jakafi) that I take every day. Those pills allow me to live a normal life and I am VERY grateful. I have been getting these pills from Accredo for 5 years, and I have found the company to be very professional. This time, though, there was a scary glitch. Typically, after you request the refill the customer service representative (CSR) runs a "test claim". Then, once you agree to the co-pay and confirm shipping details, you are all set. But not this time! "Mr. Schorr, your claim was denied. It says your insurance expired December 31st." I freaked out! There's no way I could pay the $140,000 for the medicine this year. "There must be some mistake" I said as I urged the CSR to check again. Same result.

So I called United. Whew! Yes, their CSR confirmed I had insurance that was in effect. (I had feared I had missed something in the mail and forgotten to renew). I was relieved. So then I called Accredo back. Again, same result. United said I had insurance, Accredo said I didn't. Still freaking I called Incyte Cares, the program from the makers of Jakafi. The woman there was sympathetic but said there was nothing she could do. She did give me a list of other specialty pharmacies that could provide the medicine. At that point, I didn't know whether or not to bail on Accredo.

I made a second call to United. This time a more knowledgeable CSR figured it out. They had changed by Rx Group number. But they had not told me yet. And they definitely had not told Accredo. So the man gave me the new number over the phone and assured me a new card was on the way and that HE would call Accredo. I didn't wait, I was running out of the cancer fighting pills. I attempted to give Accredo the new number. But apparently CSRs are not allowed to enter them. So all I could do was provide it and wait as it wound its way through the bureaucracy. This was late in the week. By the weekend, I had still received no call back. So I called the on call number. A pharmacist called me back. She understood my concern, took the group number, but the insurance coordinators wouldn't be at work until the new week. I was watching myself take my last doses of my pills and worrying. I recalled how a specialist had told me never to miss taking my meds as I would experience a "cytokine storm." There is no way I wanted to experience that!

On Monday, I called again. Yes, the CSR could see the new group number in my profile but no, the claim still couldn't go through. Ugh! I was ready to call Steve Miller, head of Express Scripts. I had met him when I participated in NCI's President's Cancer Panel. I watched my pill supply dwindle. Tuesday brought good news. First the claim for one bottle of pills went through and then the Accredo resolution team was able to process the other.

Happy ending for me? Yes. But as you can imagine—and as an Accredo CSR confirmed—many, many patients have the same anxiety and craziness at the beginning of the year as insurance plans make changes and either neglect to tell everyone or there are terrible delays. I only heard about United's January 1st change to my plan on January 26th when I had to probe and ask. What about someone who doesn't know to do that?

The insurance companies need much better quality control when they change anything so that the consumer, often very sick people, are not left in the lurch. And specialty pharmacies need to make it easier and quicker to update insurance info. As a journalist, I sought comment from United and Express Scripts—no response as of this writing.

Wednesday, 1/31: Here is a quote from Ellen Drazen at Express Scripts communications: "Each January 1, many individuals experience changes in benefits and/or providers, including health insurer, PBM, or in-network doctors, hospitals and pharmacies. Through year-long preparation and improved technology, we work to ensure a seamless transition for the 83 million patients we serve. Service disruptions due to benefit changes are rare, but do happen. If an issue with benefits does occur, we work swiftly to resolve any issues and communicate updates with the patients."

My comment: I am told by people inside Accredo and people who have interacted with them that this happens much more than the rare case. No matter what, it is terrifying for the individual and shouldn't happen at all. Each little digit on an insurer's spreadsheet or in a specialty pharmacy's computer screen represents a real - probably fairly sick - person. They (we) deserve a higher level of meticulous care.

What is YOUR story?  Please share in the comments, or write to our staff in comments@patientpower.info.  I look forward to hearing from you. 

Andrew Schorr, Founder
Patient Power

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