The Saga of Specialty Medications
At the end of June, I had to switch health insurance providers because COBRA ran out on my existing insurance. I purchased new insurance for Lut, because ever since he got on Medicaid four years ago, I have feared he will require a treatment or a provider that won’t take Medicaid. (I am seriously questioning the wisdom of this choice.)
He started a course of Revlimid and Ninlaro on July 5, and I made sure to order the medication before the end of June because I didn’t want the first thing I did with a new insurer be “order $25,000 of specialty cancer meds.” I didn’t know if Medicaid would pay for the drugs or not (basically, no one knows the answer to these things until they actually try). And unlike clinical or hospital treatment, which you receive first and deal with paying for later, you can’t get medicines without paying up front.
But you can only order a month of these incredibly expensive drugs at a time. This is for good reason: Lut’s dosage was reduced this month, for example, so he can’t continue to take the old capsules (the capsules are not divisible, and they are sufficiently hazardous that, for example, pregnant medical professionals are not allowed to handle them.)
This meant that we had to get a new round of medications to start Lut on as of August 2.
A timeline of the saga!
July 13: Cigna sends us a pre-authorization letter for the Revlimid and Ninlaro prescriptions, to let us know they will be covered.
Friday, July 23-ish: Sarah Cannon Cancer Center sends the prescription to to CVS Specialty Pharmacy.
Wednesday, July 28: I call CVS Specialty Pharmacy and spend ~25 minutes scheduling delivery for Friday, 7/30. In the evening, I fly out to visit Terry. I give Lut his insurance cards in case he has an emergency (I usually carry them because I’m always with him when he sees a medical professional.)
Friday, July 30, 6PM Central: CVS Specialty Pharmacy calls to say that they do not take our new insurer, Cigna. Cigna has their own specialty pharmacy, Accredo. CVS Specialty Pharmacy does the best they can to transfer our info to Accredo.
I call Accredo. The first person at Accredo transfers me to a new person who works with specialty meds. (From here on, assume that any call to Accredo required talking to a minimum of two people unless otherwise specified). They eventually conclude that they know about Lut and have his Cigna information, but don’t have his Medicaid number. They know about the prescription from CVS, but they can’t fill it without the clinic sending it to them directly. (I suspect, but do not know, that this is a regulatory requirement.) The clinic is closed, and will not re-open until Monday. They ask when Lut is supposed to start taking it. “On Monday,” I tell them.
I don’t have Lut’s Medicaid info. I email him to ask him to call Accredo and give it to them.
Saturday, July 31, night: I check my email and discover Lut sent me the Medicaid number and asked me to call Accredo. Accredo is already closed.
Sunday, August 1: I call Accredo. They are not open on Sunday.
Monday, August 2: I call Accredo, and give his Medicaid number to them. The person taking the information is confused and upset that Medicaid only has a member ID, and not a slew of other numbers like private insurers.
I call the clinic and leave a message that they need to send the prescriptions to Accredo.
Tuesday, August 3: The clinic returns my call. They will send the prescription to Accredo tomorrow.
Wednesday, August 4: I get an email from Cigna that they have “new documents” for Lut. I check Lut’s account, and it shows the Ninlaro with a $7900 co-pay. The co-pay is exactly what I expected: the remaining out-of-pocket for the new insurance policy. I anticipate that either Medicaid or Celgene’s grant program will cover the co-pay.
I call Accredo. They have the prescription but Missouri state law requires that it be authorized by a physician, and the clinic put the nurse practitioner down as the prescriber instead. They ask when Lut is supposed to start taking it. “Two days ago,” I tell them.
I call the clinic and leave a message asking them to get Accredo additional information.
Thursday, August 5: The clinic calls me back to say they got Accredo the information they needed.
I call Accredo. Accredo says they have the information they need but they’re waiting on authorization from the insurer. I remind them that Lut also has Medicaid. Accredo: “He does? We don’t show that.” I give them the Medicaid number again. Accredo says it takes “a day or two” to get the prescription approved and filled, and they will call me when it’s ready for scheduling. They ask when Lut is supposed to start taking it. “4 days ago,” I tell them.
I take pictures of Lut’s insurance cards and store them in EverNote, so that I’ll have them on my phone for future reference.
Monday, August 9: I call Accredo and ask their automated system for a status update on the order. It is “processing.”
Wednesday, August 11, 10AM: I call Accredo and wait on hold to talk to a person about why this is still “processing”. After being shuttled through a few people, I reach a rep who tells me: “It takes 5-7 business days for a new prescription to go through. But I’ll mark it as ‘Urgent’ for you. When is he supposed to start taking it?” “9 days ago.”
I call the clinic to ask if they want to reschedule the 8/20 appointment that was supposed to be ‘after you finish the next course of Revlimid’ and will now be -- at best -- after a week of it. I leave a slightly hysterical message to this effect.
The clinic calls back to say that they’ve been monitoring the prescription and they had last called Accredo on Tuesday about it. Accredo had told them ‘we’ll mark it as urgent.’
Thursday, August 12, morning: A bot from Accredo calls me. “We’re calling to schedule your order. Wait, we can’t schedule your order. You need to talk to a person.” It puts me on hold for several minutes, then gives me a number and asks me if I want to call back or stay on hold. Me: “sure let's hold some more because lord knows if you'll have any clue why I'm calling or what I need if I call back. Since you haven’t told me why you called.”
I hold for several more minutes, and am put through to payment options.
Payment Options: “I have no idea who you are or why you are calling us.”
Me: gives them all the information about Lut and herself
Payment Options: “The system says we’re waiting for prior authorization.”
Me: “you know, the insurance co sent us prior authorization on July 13”
Payment: “Oh yeah, we show that for July 20. Let me put you through to an expert on Revlimid & Ninlaro.”
I hold.
Expert: “We're waiting on prior auth”
Me: “I really don’t think you are.”
Expert: pokes more
Expert: “Wait we have authorization. We can send you the drugs! But oh ... there's a $7900 copay”
Me: "So he has Medicaid”
Expert: “He does? We don't show that.”
Me: gives Medicaid info to Accredo for the third time
Expert: pokes system some more
Expert: “So Ninlaro shows no copay now, let me re-submit the claim on Revlimid ...”
Expert: “There's no copay on Revlimid either now?”
Me: “Yay? I wish I knew why.”
Expert: “yeah me too. I will put a note for Scheduling to call you to schedule delivery.”
Thursday Afternoon: The clinic calls me. “So I just got off the phone with Accredo and there’s a $7900 co-pay on the Revlimid.”
Me: “I wish this surprised me in any way.”
Me: “So he’s got Medicaid and also there’s a grant program for Revlimid so I’m not sure why they can’t charge the co-pay to one or the other of those.”
Clinic: “I’m gonna call our sales rep contact with Accredo, but he might be gone for the day. I’ll call you back tomorrow with whatever I find out.”
August 13, Friday, morning: Accredo bot calls: “We need to schedule a delivery. Oh wait, we can’t. Let me put you through a person.”
Me: “Is this just going to be yesterday morning all over again?”
Accredo bot: ¯_(ツ)_/¯
Me: holds for a few minutes
Accredo rep: “I know who you were called regarding”
Me: “Woohoo!”
Accredo rep: gets standard confirming info from me “Okay, so we got your Medicaid verified. You don’t owe anything for the meds.”
Me: “Yay! Does that mean we can schedule delivery now?”
Accredo rep: “Yes! Let me put you through to scheduling.”
Me: holds for several minutes
Same Accredo rep: “... so it turns out no. They need to do a few more things before it’s ready for scheduling. This call was just to let you know the Medicaid was verified. Another bot will call you when it’s ready for scheduling.”
And that brings us to the present: still waiting. At least we’re back to “no money owed”, but at this point I will not believe that the process is over until I actually have a Revlimid bottle for the correct dosage in my hands.
Getting treatment for cancer is not as bad as having cancer, but it is A LOT. x_x
This entry was originally posted at https://rowyn.dreamwidth.org/2021/08/13/revlimidsaga.html. Please comment there using OpenID.