Tediosity*

It’s been a very frustrating couple of weeks.

But first some good news: I did another 24-hour urine test a couple weeks ago, and once again, no measurable protein in my urine. The last one was done in March 2023, so it’s been nearly a year with no protein evident. Amazing.

On to the frustration:

I’d been trying to get my Trulicity for several weeks. Every time I call or go to the pharmacy, it’s the same story: “It’s out of stock, and we don’t know when we’ll get any in.” The last time I was there, I spoke with the pharmacist, and she said that they get it in about once every five months, then it’s gone immediately because they give it to people who have been waiting the longest. She recommended I call my endocrinologist to see if she would prescribe me something else. I asked if other pharmacies would be worth checking, but she said it’s a widespread problem. I have had issues getting that med regularly, but never for this long of a time.  Per the googles, “the shortage is expected to last through 2024.” Wow.

I messaged my doctor through myChart with the above information and waited several days. No response. Per myChart, they’re supposed to respond within 48 hours. I messaged again. The next day I had a voicemail stating I was scheduled for an appointment with the endocrinology nurse practitioner (not my regular provider) on February 8^th.  I love when doctors’ offices just schedule an appointment without checking with the patient first. Of COURSE I’m not available that day. I called back to reschedule, and the next opening is at the end of July. Well okay then. But it seems unwise to go seven months without medication. I explained the situation to the receptionist, who said she would pass that information on to the NP. I told her I had not yet seen the NP, but she said that shouldn’t be a problem.

Days passed… no response, and no call from Walgreens that I have a prescription to pick up. I called back, explained the situation again, and she said she would forward the information to my original endocrinologist. The doctor messaged me the next day stating that she would send in a prescription for Ozempic. Of course that medication also has its own issues with shortages, so we’ll see. I also told her that another potential issue is my possible copay. My boyfriend had to stop taking it after the first of the year because his copay was over $600.00. (Ridiculous.) She asked me to let her know what my copay is. Will do… but as of today, per the Walgreens app, it is “delayed, reviewing insurance.” As of the first of the year, my doctor had to obtain preauthorization for the Trulicity. Maybe it’s the same for the Ozempic. Who knows. Hopefully they’ll figure it out soon. It’s been three weeks since I’ve taken the Trulicity.  

But that minor mess was just the warm up.

Sometime during the second week of this month, I received a letter from my insurance (BCBS Federal) stating they were not paying for my chemo treatments because it is considered “experimental and investigational,” and there are no studies that demonstrate improvement using the medication I’m on. 

Duh. Really?

No studies out there for a new disease that about 300 people in the world are known to have? (Okay, in all fairness, it’s probably increased now to maybe 350 people.) Hell, if you gave me an aspirin for it, it would be considered experimental.

The letter listed four specific dates from early 2023 that were in question. This is all so confusing. After my last biopsy in August of last year, they approved the continuation of my chemo. But now, after having been on Kyprolis since May of 2021, they’re now considering it “experimental and investigational”?

I messaged my oncologist asking if I should appeal or if he was handling this. He said he had filed an appeal but suggested I do the same. I asked him if he would like me to reach out to my former nephrologist in Pennsylvania (who is regarded as a specialist in this field) as well as my nephrologist here. He said yes. I messaged my local nephrologist, and someone from his office said he would be in touch with Dr. T. 

I messaged the nephrologist in PA and got a message back from a nurse asking what medication I was referring to and what specific information the doctor was requesting. I messaged back the name of the chemo med and said I had no idea what information the doctor needed, which is why I was requesting that the nephrologist contact him. A different nurse responded back that they had called the office, and the office told them to fax over my records, which they did. Oh, and the nurse asked, did I realize I hadn’t been seen by the doctor there since 2021, and did I need to schedule an appointment or am I being followed by someone else?

Good lord.

I explained that my oncologist already HAS those records. Since Dr. A is an expert in this field, I was requesting (once again) that she contact the doctor to see if she can provide any supporting information to help convince my insurance company to approve my treatments. And yes, I’m being followed by another provider. I didn’t hear back. I don’t know if she contacted the oncologist or not.

In reading the information that came with the denial, it said I could request an urgent review of my appeal if denying this treatment “could seriously jeopardize [my]…health, or ability to regain maximum function…” I absolutely believe my situation is considered urgent. (We have no idea how a delay in treatment might affect my kidneys.) An urgent review requires them to respond within 72 hours of the receipt of my request.  

I typed up a letter with a brief description of my history with this disease and the improvement in my creatinine, eGFR, hemoglobin, and proteinuria since starting this course of treatment. I pointed out that because of the rarity of this disease, there ARE no established protocols. I explained what would happen—eventual dialysis—without treatment. And I said that they should consider approving this treatment to potentially help others recover from this disease; they should not be a hindrance to the process.

I copied several pages of relevant lab results and mailed everything off. It was the MLK holiday that Monday, so it didn’t go out until Tuesday. Somewhere along the way, I had obtained the phone number for a BCBS Federal Program case manager and saved it in my phone. I called her, explained the situation, and stated I had mailed an appeal. She heard me out (allowed me to vent, basically), and said she would talk with other case managers who had more experience with this sort of thing. I asked her if I should call the main BCBS customer service number since I had already spoken with her. She said I should, just to keep them in the loop of everything. She said she would call me later in the day.

I tried SEVERAL times to call the main BCBS number and although I of course said “member” when the automated system asked if I was calling as a member or provider, it kept dumping me into the “provider” system, asking for my NPI number. I continued to call between patients, but over and over again this happened, for hours. It was SOOOO frustrating! I was unable to get through that day. At the end of the day, I had a message from the case manager, asking me to call her, but by the time I got the message, it was after hours.  

The next morning, I called the case manager and explained what had happened with the BCBS phone number. (I hadn’t tried it yet that morning.) From speaking with her colleagues, she had gotten a couple different phone numbers, one for the “medical reviewer” department who could tell me why the claim was denied. She also gave me a number for a “peer-to-peer” reviewer which would put my oncologist in touch with someone in the “appeals” department. I figured my doctor already had this information but wrote down the number regardless.

I again tried to call BCBS but got the same phone glitch as the day before: it kept treating me as provider instead of a member, and there was no way to get to a human. I found another local number, called it and explained the hiccup with the main number. She got me back into the automated system of the main number, and I was SURE the same thing was going to happen, but lo and behold, it finally recognized me as a member. I was eventually connected with a human being, explained the situation again, told her I had mailed an appeal, and had spoken with my case manager. She began reading off the appeal process, stating that I could request an urgent review. I said yes, that’s what I’m doing—I’m requesting an urgent review.  

She said that nothing could be done until my appeal was received, although she would note the request in my record.  She recommended I either upload the information into myChart or fax it to get it there sooner. Because it was 30 pages long (due to the lab results I was sending), I knew uploading it would be a bitch. I’d have to take a picture of each page with my phone and then upload it. I decided to fax it.

(And because of the way things work…as I was talking with her, I got in my car to drive to clinic. My phone connected to the car’s Bluetooth as usual, but within about two minutes it had disconnected. I initially thought we got disconnected but realized what had happened. I had to pull off the road to talk to her. This NEVER happens. I use the Bluetooth in that car practically every single day. But of course, when I’m on an actual important phone call, it disconnects me.)

So…this is all happening on Wednesday, January 17^th. I was scheduled for chemo that afternoon. However, the day before, my oncologist had told me through myChart not to come in because he wasn’t sure the insurance was going to cover it. Understandable. But I got another reminder text about my appointment that day. I had assumed that someone in the doc’s office would alert their front office that my appointment was cancelled, but nope. So I called them to cancel the appointment, giving them a 15 second summary of what was going on and that Dr. T had told me not to come in.

My schedule that day was clinic in the morning about an hour west of Albuquerque, then chemo (now cancelled) back in Albuquerque, then hit the road in the late afternoon to Ruidoso about three and a half hours southeast of Albuquerque. Google found me a place to fax all that information (fortunately I had the presence of mind to bring all the paperwork with me) in Los Lunas, which would be on my way as I headed to my next clinic.  

Okay. All that was taken care of. I headed out to clinic. While I was there, the head nurse from oncology called me and left a message stating, “Hi Lori, we got your message about cancelling your appointment today, but that’s not the information we have. I checked with [someone in the office] who said that we don’t need prior approval for your chemo. Call me back.”

I was just instantly irritated. I mean, did anyone think to check with the DOCTOR? I said when I cancelled the appointment that HE was the one who told me not to come in. He’s right down the hall. Did anyone ask HIM?

When I had a moment, I called back, asked to speak to the nurse but the receptionist just read me the note that the nurse had left about not needing prior auth. So I asked her, “Did you check with Dr. T? HE told me not to come in.” I think I must have sounded irritated (but hopefully not as much as I actually felt) because she said, “I’m just reading the message. Let me transfer you to nursing.” Then another nurse answered the phone, not the head nurse who called me, and said, “I’m out of the loop. What’s going on?”

Son of a bitch.

I explained the whole situation AGAIN for the 53^rd time. She told me to hold on, and I could hear her and the head nurse discussing the whole thing. She came back on the line and said again that prior authorization wasn’t needed. I asked her to go talk to the doctor since, AGAIN, as of 3:03 PM the day before he told me NOT to come in. More back and forth between her and the other nurse. She came back on the line and said, “Well, I guess if he told you not to come in, we’ll cancel your appointment for today.”

Oh my god. All that to cancel an appointment that should have already been cancelled. I said thanks and that I was scheduled again for January 31^st and hopefully this would all be squared away by then.

(The nurses there are incredibly nice. I was just so frustrated by this time. I hope I wasn’t rude on the phone.)

I finished my half day at clinic, headed back east, and stopped at a UPS store to fax my stuff. I could have taken it to work to fax but all that stuff gets saved in our system, and I didn’t want my medical records stored there. But it was nearly $60.00 to fax it all! Can you believe it? Just under $2.00 per page. That’s ridiculous. Anyway, it was done. Back on the road.

I had indicated on the fax cover sheet that I had already mailed this information, and that I was requesting an urgent review of my appeal. By my math, if they received it on Thursday via fax (giving them a bit of grace since I faxed it late afternoon on Wednesday), I should have received a response by Tuesday. And even if they went by my mailed appeal, which was received by them Friday, they would have to respond by Wednesday.

Not a peep from anyone Tuesday or Wednesday. Wednesday I was in a clinic with little cell service, and I had a coworker with me so I wouldn’t have wanted to discuss all that in front of him. Didn’t matter regardless. No call, email, nothing. Nice.

Thursday I was off, so I called the main number again at BCBS; fortunately this time the call went through. I was on the phone with this nice woman for an hour and ten minutes, all but probably 15 minutes of which I was intermittently placed on hold. She said that a letter had been sent to me on January 22 stating that they had received a duplicate of an appeal that I had faxed. (Duh.) I asked if the letter was ONLY an acknowledgement or if it contained any information about the status of my appeal.

Hold please.

It was only an acknowledgement of the appeal, no information on the appeal itself. “Okay, so what is the next step? I requested an urgent review of my appeal, and by my math, they should have contacted me yesterday at the latest, but I’ve heard nothing. What is my next step?”

Hold please.

After a long hold, she said that on December 19^th, my treatment had been approved from 5/10/2023 through 5/10/2024. I asked why my doctor and I both received a letter dated 1/5/2024 that my treatment was denied due to its experimental status.

Hold please.

“That letter only referred to four dates of treatment in the early part of 2023. You and your doctor can still appeal those.” “Yes. As I mentioned, my doctor and I have already sent in appeals.”         

I asked if my oncologist had been informed of this approval through May 2024.

Hold please.

She said that a letter was sent to him on December 26^th stating that the denial of services for 5/10/2023 was overturned on December 19^th.  “Okay but did that letter indicate that I was covered through 5/10/2024?”

Hold please.

“The letter states that the denial for the claim on 5/10/2023 was overturned.” My left eye began to twitch. “Hmmm. I guess I’m not asking the question the correct way. Let me try this. Was my doctor informed that I am covered for my current chemotherapy through 5/10/2024?”

Say it with me: Hold please.

“No.”

“I see. So how would my doctor know that I can continue to receive my chemotherapy treatment?”

Hold please.

She didn’t know. The bottom line is my doctor was NOT informed of this, and she didn’t have any further information on that.

“Okay. Can you send me a letter, by email if possible, stating that I am covered through 5/10/2024?”
“I can send you a letter but we can’t email anything. It can take up to 72 hours for the letter to be generated, but you should receive it within seven to ten days.”
“Thank you. Can I have a reference number or something regarding this approval that I can provide to my doctor?”
“We don’t have a reference number but we have a call reference number.” Right eye started twitching. She gave me the number.

“Now, just to be clear, if someone from my oncologist’s office calls BCBS and gives them this call reference number, whoever answers the phone at BCBS will be able to see that my treatment has been approved through 5/10/2024.”

Hold please.

“Yes.”

“Great. Now, what do I do about treatments after 5/10/2024?”
“What do you mean?” Oh my god.
“You said I’m covered for chemotherapy through 5/10/2024. What do I do about continuing that treatment AFTER 5/10/2024?”

Hold please.

“Your doctor will have to submit another request and supporting documentation for approval.” “Okay, thank you.”

I did ask AGAIN about the call reference number and the ability of ANYONE at BCBS to see that authorization for treatment. It’s not that I don’t trust them but, oh wait, it IS that I don’t trust them. But again, she said yes.

Listen, these are truly only the highlights. It was a very tedious conversation. But at least it was over, and, I’ll apologize in advance, at least it was with someone who was a native English speaker. I have incredible difficulty understanding accents over the phone. If a person is right in front of me, no problem. Over the phone? I’m lost. So I’m very grateful for that. I can’t imagine trying to navigate that conversation when I couldn’t understand the other person well.

So… I sent all this information to my doctor via myChart and said that unless I hear otherwise, I’m assuming I should show up for chemo on January 31^st. He said he would send it to his billing people. I’ve heard nothing back so I’m assuming all is fine.

I then called my case manager back and got her voicemail. I told her she didn’t need to call me back, gave her the basic resolution as it stands now, requested that she too put that call reference number in my record, and thanked her for her help and for letting me vent.

It sounds like I didn’t need to miss my appointment two weeks ago, but again, I can’t blame the doctor. If the insurance company didn’t inform him (or me) that I’d been approved through May, how was he to know? How stupid is that?

And also, how stupid is it for them to deny specific claims when IT’S ALL THE SAME MEDICATION FOR THE SAME DISEASE??? They’re just going to cherry pick certain dates to deny? Because…?

But at least for now it’s done. I put a note in my phone for 4/10/2024 to remind the oncologist that my authorization will expire on 5/10/2024.

So it’s possible that I didn’t even need to do this appeal. I have no idea if it will help with those denied claims from early 2023. But the whole grounds for denial really got under my skin. So if a person is unlucky enough to develop a rare disease, they should be punished for it? Because there’s no established protocol, they should just be denied treatment altogether, even when it’s working? Does this make any sense to anyone?

What I wanted to say, if I ever got to speak to the correct person—such as the medical reviewer who denied the claim—was, “Okay, my treatment is considered experimental. Please email me the standard treatment protocol you recommend for this disease.” I would have loved to hear the response because NO PROTOCOL EXISTS. So again, because I’m unlucky, I should go from a mostly-functioning working professional to being on dialysis and not knowing if I’ll be able to work or not. Because someone who has never seen me before or seen anyone with this disease before said so.

It just pisses me off. Throughout these pages I’ve listed all the side effects of this disease and the treatment. Just the highlights here: a total of nine days in the hospital, near congestive heart failure, anemia, diabetes, cataracts, that stupid heartburn, and of course the never-ending fatigue. I’ve gone through all that because not being on dialysis for the rest of my life is worth it. And yet someone just has the right to say, “Well too bad. Sucks for you. We make the rules.” And they’re right. That’s the thing. We’re just at the mercy of insurance companies (if we’re lucky enough to even have insurance). I understand that, but at the same time, it seems like a HEALTH insurance company would want to keep its members healthy. I know—I’m living in a dream world.

And while I don’t yet fully understand the whole dialysis thing with regard to payment (I know there’s a specific type of Medicare dialysis patients are put on), do commercial insurance companies have to pay for dialysis as well? If so, wouldn’t an insurance company want to keep someone OFF dialysis so they don’t have to pay for it, if for no other reason?

But it’s all just incredibly tedious, tiresome, irritating, and time-consuming. Trying to fit all these phone calls and messages into a working day is tough. But at least it’s over for the next four months. We’ll see what hoops we get to jump through after that.

*Depending on what dictionary you look at, “tediosity” may or may not be word. But it should be.