rowyn | Entries tagged with medical care

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.

I was supposed to go to Seattle on Wednesday, June 9, but Lut was admitted to the hospital on June 6, after he grew increasingly confused over the course of the weekend.

The hospital never quite figured out what he had. “Maybe pneumonia.” But it cleared up after a few days, and he was discharged on June 9, about the same time the flight I’d originally scheduled was leaving the airport. In theory, I could’ve switched to a later flight instead of cancelling the trip, but by that point I didn’t want to leave Lut alone to fend for himself for several days.

This was just as well, because a week later, he was readmitted to the hospital, for confusion and hypoxia (low blood oxygen).

The diagnosis was, again, “maybe pneumonia”. They gave him yet more antibiotics, and on Saturday, June 19, sent him home. This time, they prescribed oxygen for him, although this required something of a song-and-dance to accomplish.

Nurse: “We can discharge you today, just need to give you the breathing test to find out if you need oxygen at home.”
Respiratory therapist: comes to his room, takes him off oxygen, brings him back a few minutes later. “He did great! Won’t need oxygen at home.”
Lut: lies down in bed
Lut’s blood oxygen: plummets
Nurse and respiratory therapist: futz with two different monitors and sensors to make sure it’s not a monitor problem
Nurse: “Well, we can’t send him home with his blood oxygen this low.”
Me: “You mean you need to send him home with oxygen, right?”
Nurse: “No, we can’t send him home with oxygen because he passed the breathing test so insurance won’t pay for it.”
Me: “... can I just buy oxygen? With money?”
Nurse: “Sadly, no.”
Me: “So insurance will pay for additional days at the hospital but not for the much cheaper “send home with oxygen”?”
Nurse: “I KNOW RIGHT??? It’s so frustrating. >_<”

By now, the respiratory therapist had left. About an hour later, the nurse came back and took Lut off oxygen. “The RT will do the re-test in 10 minutes and presumably he’ll fail it then.”

An hour passed, of the oxygen monitor beeping because Lut’s was too low. Finally, the RT returned. The nurse and I coached Lut to fail it. “Breathe shallowly! No deep breaths!” The RT brought him back in thirty seconds. Mission accomplished.

I’ve been monitoring his blood oxygen closely since we got home. He does well enough while using the oxygen that I don’t bother with readings while he’s on it. Whenever he’s sitting without wearing it, I check it every hour or so -- we have one of those little pulse-oximeters. On the first two days after he was discharged, he still had the occasional reading of 89 or 88 (they want 90+, and when he left the hospital he was more like 85 on room air). But since Tuesday or so, I’ve only had one reading of 89, and that went above 90 immediately.

We talked to his general practitioner on Thursday 6/24. He said to keep an eye on it and experiment with leaving it off as long as oxygen levels stayed high. But even if he didn’t need it at all, we should wait 4 weeks before calling to return the equipment. You don’t actually buy oxygen at all. You rent an oxygen concentrator. While the patient is at home, the patient uses the oxygen concentrator with a 50-foot extension on the cannula so that they can move around the house. When you go out, you take a tank with you to use. There’s a machine that goes on top of the concentrator that can be used to fill little portable tanks that fit in a shoulder sling, which is a lot less annoying than the big tank on a wheeled caddy that the hospital sent us home with. We have three of those tanks, too, but those are “in case the power goes out” rather than designed for travel. The little tanks have a special valve so that they only dispense oxygen when he inhales, instead of continuously, so they last just as long despite being much smaller. I don’t know why the big tanks don’t have the same kind of valve.

After a hospital stay, they always send out home health aides, so he’ll get physical, occupational, and respiratory therapy starting next week.

My little victory during all of this has been getting back to regular exercise. Over the course of the last year and a half, I’ve dropped from 5+ times per week to 3-4 times. Every month this year, I’ve had “exercise 20 times” down as a stretch goal, and for the last three months I have ended up at 16-17 instead. In June, I exercised for the first three days, and then Lut grew sicker and I didn’t exercise for a week. On June 11, I looked at my list of stretch goals and thought “It is still technically possible to make this goal. I will do the thing.”

And then Lut was hospitalized again and I thought “okay, Imma lower my bar for what qualifies as exercise.”

So I started counting stuff like “did one 10 minute beginner’s aerobics video” or “did 30 minutes of pacing while on the phone” (Google Fit measures how much pacing I do, and I make an effort to pace as if I were walking, by going from one end of the house to the other and then back.)

Doing this reminded me of when I used to trick myself into starting to exercise by promising myself I could stop any time. “Just five minutes. You can always stop.” And then once I got started, I’d always continue through to my usual end.

Except that this time, I was letting myself actually stop.

I made it to 21 times in June -- maybe 22 if I decide to exercise later today. But I’ll take it, either way. My overall activity level this month is higher than at any point since October 2020. “Anything is better than nothing” is a good strategy to keep in mind.

One of the things about cancer treatment is that you make plans, and then things happen and then you probably throw out that plan and try something different. And all of this is both expensive and unavoidable. Not necessarily expensive to the patient personally, because healthcare costs are beyond bizarre and well into surreal in this country. But expensive for someone.

Back in December, the plan was that the doctors would collect stem cells from him in the middle of the month, and then he'd get a megadose of chemotherapy at the end of the month.

Then he got pneumonia after the first two days of shots before collection, so the whole thing was aborted for two weeks. At the start of January, a pulmonary specialist saw him and said his lungs still showed possible signs of infection. You cannot give someone who has even a trace of infection a megadose of chemotherapy to kill everything in their bone marrow. Because that annihilates their immune system. Any infection would take over immediately.

So they couldn't start doing the transplant any time soon. However, they still wanted to do the collection now, because the more chemo you get the weaker your stem cells are, so this is a sooner-the-better situation on collecting stem cells.

Next plan was to collect stem cells in early January, put Lut back on normal chemo until the infection was provably completely gone, and then do the transplant in early February or so.

So in early January, while Lut had the out-patient surgery to place the trifusion line, I called the speciality pharmacy about getting him back on Revlimid.

I guess I never really wrote about Revlimid. Revlimid is a crazy-expensive chemotherapy drug specifically for treating multiple myeloma. The retail cost is around, I dunno, $800 per a pill. You take one pill a day, two weeks on and one week off. My insurance has a $12,800 out-of-pocket cap. (There are like three different levels of caps: $3200 deductible, $6700 treatment, $12,800 out-of-pocket. Lut has cancer. He hit them all last year. He will hit them all this year too). With most kinds of medical costs, you get the treatment whether you can pay for it or not. But pharmacies aren't going to send you $11,0000 in drugs without payment up front, from you or your insurance provider or someone. Fortunately, there's a grant program, Celgene, that will cover the out-of-pocket for Revlimid if your annual income is less than $100k.

But all this makes ordering Revlimid complicated and weird. I started the call before Lut went into surgery and I was still on it when he came out. Eventually, I finished, and arranged to have the Revlimid delivered to a convenient local branch of the pharmacy instead of to my house like usual (they do not stock $800-a-pill esoteric drugs at local pharmacies in general), because we were going to be out of the house.

The next day, Wednesday, we went to the apheresis center and they checked to see if Lut had produced enough stems cells to collect. He hadn't. He got more shots that night, including a different drug, and then we went back Thursday. Still no luck.

Nurse-coordinator: "Okay, we're going to abort this try. Do not start the Revlimid!"
Me: "Uh, should I pick up the Revlimid? Because it was supposed to arrive at the pharmacy this morning."
NC: "No, don't."

When I got home, Lut told me the pharmacy had called and said we could not pick it up. "They said it has to be sent to the house, it can't be sent to the pharmacy."

Me: "Well ... that's very weird. Maybe they got the memo that it was cancelled? We didn't want it anyway so ... good?"

Fast-forward two weeks, to Friday morning. Lut has tried and failed stem cell collection a third time. We get to try a fourth time next week, using a regimen three times as bad as the previous attempts. He is still not back on regular chemo to manage his cancer because they're still trying to collect.

I get a call from the Sarah Cannon Cancer Center, the place that prescribed the Revlimid. "CVS Pharmacy called and said your Revlimid is still ready for pickup."

Me: "... they told Lut we couldn't have it?"

SCCC: "... I got nothin'. They say now that it's been there for two weeks and they're going to send it back and destroy it if you don't pick it up. You might as well pick it up, Celgene and your insurer already paid for it regardless."

Me: "Well. Okay then."

And this is why I have $11,000 in cancer drugs that Lut isn't currently taking on my kitchen counter. We kind of expect he will be back on Revlimid at some point, although at this stage probably not in the next several months. Still, it keeps for a year and doesn't have any unusual storage requirements. So hopefully it'll be fine when he needs it. And it will save me from dealing with Revlimid bureaucracy for three weeks when the doctors put him back on it. I would rather the pharmacy had been able to just ship it to some other customer who needed it, but apparently once it's shipped anywhere it can only be given to the original patient it was prescribed for. Medicine has weird regulations, y'all. I don't even know who made that rule.