rowyn | Entries tagged with health insurance

A week or so ago, we received an unexpected package in the mail. It was from the Leukemia & Lymphoma Society (LLS), welcoming Lut to the grant program.

Me: “Huh. Well, that’s nice, I can use it to pay his health insurance premiums if I can get sufficient proof of payment in a form I can submit to them. Maybe Accredo billed LLS and that’s how Accredo covered the copay? I never did find out who made the copay in August.”

The next day, LLS sent us a pharmacy card: “Present this to your pharmacy or specialty pharmacy and we’ll pay claims directly, so you don’t have to submit a reimbursement form.”

Me: “We’re at out-of-pocket cap now but that may be useful next year.”

Wednesday, we went to the oncologist. He is happy with how Lut is doing on the current dosages, and said he’d be sending in refills.

This morning, the phone rang.

Accredo bot: "We are calling with refill information!" confirms identity
Accredo bot: "Please hold while we connect you with a person."
Accredo hold message: "We are experiencing higher-than-usual call volumes"
Me: "YOU CALLED ME."
Me: "Why did you call me to put me through to a person when you DO NOT HAVE ANY PEOPLE."

Technically, this isn't worse than CVS Specialty Pharmacy, which often didn’t inform me that the refill had gone through at all. So I’d just have to remember to call them a few days after the clinic said they’d sent it, and hope for the best.

But I do feel like Accredo could wait to dispatch their bots to call me until they were at, like, normal call volumes. -_-

As it turned out, it only took a few minutes to connect me to a rep, Tammy.

Tammy with Accredo: "So there's $0 copay on the Revlimid."
Me: "Right."
Tammy : "And $7500 copay on the Ninlaro."
Me: "..."
Me: "ARE YOU FREAKING KIDDING ME."
Tammy: "...no?"
Me: checks Cigna's website "Who do you show paid for the prescriptions we got last month?"
Tammy: "Cigna."
Me: "Cigna has forgotten this."
Tammy: "Ooh. Guess you need to call Cigna."
Me: dies
Tammy: “Do you want to schedule the Revlimid delivery, since there’s no copay on that?”
Me: “Yes pls.”

The Revlimid is the important one of the pair. We have a leftover dose of Ninlaro, so Lut can start it on time even if Ninlaro takes an extra week or two to receive (he’s supposed to start next Thursday).

Me: schedules Revlimid delivery
Me: sighs
Me: calls Cigna
Cigna: "We show the only order was on 9/8/2021."
Me: "We received a shipment of $21000 worth of medications 3 weeks ago. Accredo says you paid for it."
Cigna: "Oh, that was reversed out. We didn't pay for it."
Me: "... Accredo shipped it. Are you saying they sent us $21,000 in medication for free, out of the goodness of their heart?"
Cigna: "Yup! We didn't pay for it. Do you want me to call Accredo?"
Me: "... sure. why not."
Cigna: connects me with Katarina at Accredo, instantly hangs up because Cigna rep don’t care
Katarina with Accredo: "So this is about the delivery from August 16?"
Me: "Sounds right."
Katarina: "We show your insurer paid it in full."
Me: "Which insurer? We have two. Cigna and Medicaid."
Katarina: "Cigna."
Me: "Who paid the co-pay?"
Katarina: "There wasn't one. Cigna paid for both in full for $9k-ish"
Me: “None of this makes sense. Can you verify it?”
Katarina: puts me on hold a few times while she talks to various people and checks systems “Everything we have says Cigna paid it in full.”
Me: "Can you call Cigna and convince them that they paid for it? Because I can't. I don't have any proof that you billed them."
Katarina: doomed voice "I can try..."
Me: waits on hold
Katarina: waits on hold
Katarina, after several minutes on hold: "I'm sorry, I can't reach Cigna."
Me: "Well, it looks like no one paid the co-pay last month, and you did get Lut into the LLS grant program. So maybe just put me through to billing and I'll pay for it with the grant now?"
Katarina: "...sure."

Lyn with Accredo Billing: "I don't show a balance?"
Me: "... Really?"
Lyn: "Let me check some more."
Lyn: "Nope, no balance."
Me: "Did the Ninlaro and Revlimid both ship?"
Lyn: checks "Yes. I show Medicaid paid for it in full."
Me: "OKAY THEN."

A few minutes later:

Email from Accredo: “We scheduled a delivery for tomorrow! Check our website for details.”
Accredo website: “We’re shipping Revlimid on Saturday. Please call to schedule the Ninlaro delivery. Your account balance is $0.”
Me: “Welp.”

My guess at this point is that Lyn was wrong about Medicaid paying for anything, and wrong about Ninlaro having shipped. Instead, someone in refills has to press a button saying “we’re charging for the Ninlaro now.” And only after that step can they transfer me through to billing to pay it. And then billing has to transfer me back to refills to actually ship it. That feels like the Accredo Way.

But I have two weeks to get the Ninlaro refill and I’ve spent over an hour on the phone with these clowns already. I’ll wait until tomorrow to see whether we get 0, 1 or 2 prescriptions, and then call on Monday to sort it out if the number of prescriptions received is less than 2. -_-

Wednesday, August 17, early afternoon: Accredo calls.
Karen: “I’m calling from Accredo, patient advocacy.” collects standard identifying information. “We show that insurance is covering both prescriptions with $0 co-pay. We can schedule your order now.”
Me: . o O (I want to know what happened to get the amount owed back to $0, but I’m not even gonna ask because maybe she’ll poke the wrong thing and it will reset to $7900.) “Great! Just a moment, we were about to go into Red Lobster to get lunch.”
Karen: “Oh, would you like to call us back?”
Me: “Oh no. Absolutely not. Please. Let’s schedule the delivery.”
Me: spends 20 minutes on the phone scheduling the order because they are required to read you the multi-page list of potential side effects and what you should do, among other time-consuming elements
Me to Lut: “So delivery is scheduled for tomorrow. I will believe it is being delivered tomorrow when you are holding the bottle in your hand.”
Me: *calls Sarah Cannon Cancer Center, leaves message asking them to call tomorrow with whether or not he should start the meds right away.

Early evening: I fly to Oregon for my nephew’s wedding, and forget my phone.

Thursday, August 18, late morning: Lut ACTUALLY RECEIVES THE MEDICATIONS.
Me: !!!
Me: calls the clinic from my sister’s phone to find out when he should start taking it
Clinic: “Now. Yes. Today would be good.”
Me: calls Lut to relay message and also explain the complex dosage stuff because the Ninlaro is once a week and taken the same day as five tiny dexamethasone pills and Revlimid has a side effect of blood clots so he needs to start taking aspirin again once he starts taking Revlimid

And that resolves it ... for this month. x_x His next cycle will start in four weeks, so in about 3 weeks, we begin anew. It SHOULD go more smoothly next time, since one way or another the out-of-pocket for Accredo for this year is now met.

Though I might give up on private insurance and switch Lut to Medicaid-only, which may or may not create new issues. The main reason I will do it is if I’m able to discern that Medicaid will in fact pay for all of his care if they’re the only insurer. I’ve been reluctant to quit private insurance because I know not everyone takes Medicaid (his primary care physician doesn’t, for instance.) But I also feel like I’m making some things (like this whole fiasco) unnecessarily complicated by having two insurers. :|

Saturday: No news.
Monday: No news.
Tuesday afternoon, Accredo calls.
Lacey: "This is Lacey from co-pay assistance. We want you to apply for a grant from the Leukemia & Lymphoma Society to cover the co-pay."
Me: "I thought Medicaid was covering that?"
Lacey: "Who told you that?"
Me: "Accredo. On Friday."
Lacey: "Well, I don't have any notes about that. Do you want to apply for the grant or not?"
Me: "Why can't he get the grant from Celgene?"
Lacey: "Because he has Medicaid, he's not eligible."
Me: "If Medicaid won't cover the copay, why does the grant specifically exclude Medicaid patients? This makes no sense."
Lacey: "I know nothing."
Me: applies for the same grant that turned Lut down when they applied for it in 2019, and that historically opened in November and ran out of money for new grants in December
Lacey: "So the status is 'pending' until the doctor confirms the diagnosis."
Me: "He had a grant from them in 2018. The diagnosis hasn't changed."
Lacey: "Oh. Well, maybe 48-72 business hours until we get a response?"

Two hours later, Sarah Cannon Cancer Center called.
Aisha: "So, our rep with Accredo said -- and, um, this didn't make sense to me so I'm not sure I followed it -- but he said that the insurer didn't have Revlimid and Ninlaro in their pharmacology so they have to add them first."
Me: "That is consistent with exactly nothing that any other person has said about this."
Aisha: "I KNOW RIGHT???"
Me: "I picked Cigna because the health insurance exchange said that they covered Revlimid and Ninlaro. Cigna sent us a pre-auth for Revlimid and Ninlaro on July 13. They know what Revlimid and Ninlaro are. Their website even showed the Ninlaro script. Is he talking about Medicaid not knowing what the drugs are?"
Aisha: "But how could Medicaid not know? I didn't ask, though. I'll send him an email to ask. I'm off tomorrow but I'll call on Thursday with whatever I find out. Did you hear anything from Accredo?"
Me: explains
Aisha: "Funding in since COVID has been weird, so the LLS might have more money in the grant fund than they used to? I guess we'll see."

Hope levels: none.

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