The upside of insurance issues

Van Gough - Portrait of Dr. Gachet
(who, I'll grant you, was not a medical
doctor, but I think it still works)

I know that over the past week, this blog has turned into insurance gripe central, you one stop shopping place for all things problematic with insurance and specialty pharmacies.

It's been heavy on my mind over the last week and a half.  But now that my new Ibrance pill case is filled up and I'm 2 days into smashing back my CDK 4/6 action with Ibrance, I feel like it's important for me to acknowledge the upside of having these problems.

I live in one of the few countries where Ibrance is currently available and I have insurance to pay for it.

And that's a huge bright side.

At least as of last April, the Ibrance list price was around $11,000.  Per month.  Approximately $523 per pill for the 21 day course. Or $392 per day for the 28 day cycle.  And that's not even including the unused 125mg and 100mg pills I had to stop taking and not restart when my neutrophils tanked.

But I have insurance to cover it.  And even with the 20% copay from my prescription coverage, because I have commercial insurance I have access to Pfizer's copay assistance card which knocks that down to $10 a month for most of the year.

And even at $11,000 per cycle, this regime is not significantly more expensive than the Faslodex I was on.  And it's not more expensive than chemo or radiation therapy.  All of which were also covered by my insurance.

I doubt its more expensive than whatever I'll be on next, which should also be easily covered by my insurance.

Cancer is expensive.  I'm really, really (really!) lucky to have good insurance that pays for most of the scans, pills, injected drugs, doctor's visits, nursing care, lab work, and lymphedema compression garments that I burn through on a regular basis.

Good insurance with a low out-of-pocket yearly max and low deductibles.

And I'm even luckier that this insurance is through my husband's work and not mine, since I'm the one with the cancer.


I read about the Affordable Care Act/Obamacare, Medicare and Medicaid, insurance exchanges, Social Security disability, and all that related mess of things.  I try to understand it, but honestly? I usually get overwhelmed and give up.  And I'm not a stupid person.  It's complicated stuff and I have the great good fortune of not needing to understand it right now.

I wish I had the answers.  I wish I could use this platform to clear everything up and we could all go off dancing in sunshine and roses. I don't have that.

And I think it's important to at least acknowledge that I do know and I do understand that for all the grousing I've been doing lately about insurance an pharmacies, at least I have them to grouse about.  I'm grateful for that.  And I know there are lots of people who only wish they had such problems.

(Also, I promise, I'm going to try and write about something that isn't a downer next time. Things around here are really quite good, honest!)

An ugly win is still a win.

Well, that wasn't easy!

After my last post on Tuesday, the one where I thought I was all set getting my Ibrance, it turned out I was not set at all.

Tuesday after work I called Walgreens Specialty Pharmacy, the specialty pharmacy that I was told would fill it, and was told, "No, sorry, we ran your insurance and it kicked back. We aren't filling it."

That was not good. 

I told them what I'd been told by my insurance company.  The woman on the phone transferred me to another Walgreens insurance specialist, not the same one who had told me it was all set and would be filled.

Definitely not a good development.

I explained the problem and how I had been told it was all set.  She repeated that it wasn't.  I told her what I'd been told.  I was holding back tears at this point, still polite, but very frustrated.  She put me on hold saying she would call my insurance and talk to them but that they'd already transferred the prescription to [Pharmacy C] and weren't going to fill it.  Couldn't fill it if they wanted to because, you know, they already transferred it.

Well, she did put me on hold, that much is true.  After being on hold for over 30 minutes the line  went dead.  I'm pretty sure she put me on hold to shut me up and just left me there on hold so she wouldn't have to work with me. Nice. (And, in case you're wondering, Walgreens Specialty Pharmacy, that is a really, really crappy way to treat someone. Anyone. I have cancer.  I need this drug.  I've been told that the continued growth of my cancer is likely caused by extended time off of this drug. Being treated this way is by your "experts" is, I feel confident in saying, not an example of good customer service.)

Ok.  This was really not good.


I called my medical insurance again.  It was now nearing 8:00 at night so I left a message for the person who had told me it was resolved asking for her help when she got in the next day.  I called the general line to get a live person and talked to one of the customer service people on duty. She confirmed that under my insurance it had to be filled by Walgreens and not [Pharmacy C], but also, after looking over the notes, told me they were still working on it and not to worry, they would resolve this.

Ok then.


The next day, I went to work.  My husband was home for the day which worked out well because he was home when [Pharmacy C] called to arrange delivery.  Should it have been filled by [Pharmacy C]?  Well, that's not what I was told.  My husband, on the other hand, was looking at a wife with growing cancer, a drug that could help if we didn't continue to have these long breaks from it, and a pharmacy who's telling him it's all set and they want to fill the prescription.  I don't think it took him too long to tell them to send it on over.

The pharmacy then told him it had to come to them from the manufacturer and they'd have it here by Friday or Monday.  My husband, who can be pushy when he needs to be, somehow convinced them to send it by courier on Thursday, the day I need to restart it.

He called to tell me the good news.  I called [Pharmacy C] (from work) to ask about the insurance.  They told me they had approval.  I said, "Great!" and left it at that (at this point, I was in no mood to ask if they were sure).


That's better.

Later on, my husband called me again to tell me my medical insurance company called and he spoke to the representative I'd been working with (I have permission on file for people to talk to him so it's not a HIPAA violation).  She was very, very apologetic and explained that as she dug into it, she found out that my Ibrance would actually be covered by my prescription coverage company, the one that now requires it to be filled by [Pharmacy C], and not my medical that requires Walgreens Specialty Pharmacy.  She also messaged me on the secure message interface to apologize there, too. Apparently they're now fixing their customer service information so things don't go this way for anyone again.  

Ok.  I appreciate that.

So, as it turns out, Walgreens reps were technically correct. Or at least correct some of the time. At least correct when they weren't telling me it was all set and they were filling it, which was in between them telling me it wasn't all set and they weren't filling it. And before leaving me on hold for half an hour and hanging up on me.

Yeah, I'm just as happy to be working with the new pharmacy and not to have to deal with them again.  That were pretty much a nightmare.

But, probably the best news of all out of this long and crazy saga?  There is absolutely no more opportunity at all this month for this to go south again and me not to get my drugs because, look what a courier dropped off at my house today:

Pretty, isn't it?




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I debated whether or not to name Walgreens by name, but I thought maybe at this point it was fair enough.  I'm not doing business with them anymore so I'm not concerned about strangers knowing where my drugs come from. And also, they really ticked me off.  A lot.

You know what else?  Now that I think about it, I have no idea why the new pharmacy was able to fill it less than a week after getting the prescription while Walgreens and [Pharmacy B] took over a week.  Did Walgreens fax over everything they needed?  Did their connection to my prescription insurance company make things faster?  Are they just that good?  No idea, but I'm not complaining!

Insurance fixes and more tumor markers

Yesterday was a good news day.  I hadn't realized the level of anxiety I was feeling until it was gone, but turns out the sense of relief was pretty darn strong.

First, I got written word from my medical insurance company that they will continue to cover the Ibrance and that their customer service contacted the pharmacy who had initially told me my medical wouldn't cover it and my Ibrance is in the pipe to be delivered for the day I need to restart.  That is really good news!

After calling them several times over the last 4 months and getting different stories each time ("No, it's not covered, talk to your drug insurance company."  "Yes, it's on the covered list but has to come from this one pharmacy."  "Who told you it was covered?  There's no list, who told you that? Well, if you say it's covered it can come from any specialty pharmacy because you don't have the drug benefit."), I sent a request for clarification through their written interface so this response was in writing. That's a whole lot better! 

"Who told you that?" is not what I need to hear when I'm calling the exact same number with the exact same company about the exact same insurance plan when I just happen to talk to a different customer service representative on that particular day.  But at least it's all set now and they did go to bat for me to make sure the pharmacy was completely on the same page, too, and verify that when the pharmacy insurance specialist said she'd worked it out, I wasn't going to get more, "Who told you that?" before my Ibrance arrived.

(And, yeah, I get it, I'm sure lots of customer service people hear all kinds of mixed up information and outright lies from people all the time.  It's just really hard when it's really important and you know you're not the one changing the story!)

Want even more good news?  How about this: my tumor marker numbers came back and they're still stable:

Scans trump tumor markers, but they're still meaningful, and pointing to the same stable-ish things the recent scans showed is a good sign.

Normal person levels are below 40, so at over 100 there's still a ways to go, but not getting worse is a good place to be right now.

Got to love some good news days to enjoy in these last weeks of summer!

Scans and Insurance Issues

Abbot and Costello doing Who's on First

I had my CT scan as scheduled on Thursday and the appointment with my oncologist the next day where I got the results.  They were for the most part good.

There was some growth in the spots of cancer in my liver, so that's the wrong direction.  But it wasn't a lot of growth, measured in milometers actually, so that's something.

I guess, this is one of those times when oncology is an art as much as a science.  Generally speaking, cancer growth, and especially growth in a vital organ, means it's time to stop one treatment and move on to the next.  But it's not much growth and (as I'm sure you've noticed) I've been off of the Ibrance a lot more than I was supposed to be in the last 4 months as we worked to keep my white blood cell numbers in a safe range.  Is the Ibrance working ok but less well than we'd hoped or is not taking Ibrance what's been working less well?

We talked about the options and at my oncologist's recommendation, we've decided to stay on Ibrance longer.  My neutrophils are still low but not too low even after a full 21-day cycle, so I, hopefully, can keep taking it without the extra long breaks now.  We won't wait another 3-4 months for another CT scan, but will instead evaluate midway with a liver ultrasound.

So I'm still on the Ibrance and I get to break in my new pill case--might as well take good news where I can get it, right?

My oncologist also mentioned that she's thinking when the Ibrance/Letrozole does punk out, the next step will probably not be an oral chemo called Xeloda, but rather another combo hormone blocker plus a different drug that helps delay resistance, exemestane and everolimus.  I think the reasoning is that because the current set, unlike tamoxifen, hasn't been a complete and total failure, a similar type treatment holds promise for me. She also mentioned that there are some great things in development now, too, that should be on the market in the near-ish future.  I'm glad to have some treatments in the wings that don't include a straight path to chemo. We don't need to cure my cancer, we just need to keep one step ahead, and more less toxic treatments are the key to that.

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So, all good news?  Easy enough? I just get my next shipment of Ibrance and keep on moving, right? Ha!  Of course not!  Turns out that I can get my scans, my oncologist, the FDA, my tumor markers, my neutrophils, and my response to Ibrance and Letrozole all pointing in the same direction and still get a wrench in the works.

This time, it's my insurance companies.  If you're interested in the saga, go ahead and read on.  If not, I certainly don't blame you (I decided I wasn't comfortable listing the names of all my insurance and pharmacy companies here, so it's even more confusing than otherwise).

When I originally went on Ibrance in April, I was told it was covered under my [Company A] pharmacy benefit.  Ibrance needs to come from what's called a Specialty Pharmacy, which is different from your local in-person pharmacies and different from the usual mail order pharmacies (cancer: always a new teaching moment).  Under my drug plan, I was told I could use any pharmacy except [Pharmacy 1] Specialty Pharmacy.  So, I got set up with [Pharmacy 2] Specialty Pharmacy, dutifully applied for Pfizer's copay extender card to bring the $2000 plus copay down to $10 a month and planned ahead for the end of the year when we hit the copay assistance maximum.

So far so good.

Then in June, I was told Ibrance wasn't covered by my pharmacy benefit (at all? anymore?) but was actually in a class of drugs covered by my [Company B] medical benefit.  Good news because with cancer I max out my medical out of pocket maximum very early in the year so as long as I use their "in network" pharmacy my copay is $0.  Better and better. But who is their in network Specialty Pharmacy, you ask?  Of course it would be [Pharmacy 1] Specialty Pharmacy, the single Specialty Pharmacy on the planet I couldn't use under my [Company A] drug benefit.  That figures.

So, no problem.  My oncologist resends my prescription to [Pharmacy 1] Specialty Pharmacy, I no longer need to save for the end of year copay, there's a delay of a few weeks but since I was still waiting for my neutrophils to go up, anyway, it was all good.

Until yesterday.

Because that's when I called [Pharmacy 1] Specialty Pharmacy to make sure my refill would be sent.  The answer?  Not exactly.

Now I'm being told that they're being told Ibrance isn't covered under my [Company B] medical after all, I'm being told it should be under my [Company A] pharmacy benefit.  So does this mean we're back to [Pharmacy 2] specialty pharmacy where I already have the paperwork filled out and can just switch back to and get my drugs?  Of course not!

Turns out [Company A] is now [Company C] and as [Company C] they will only cover the drug under a new third specialty pharmacy.  Problem is, getting it from a new pharmacy means new delays and, after the scan results, waiting a few extra weeks to get registered with another specialty pharmacy makes me very uncomfortable.

Anyone still with me here?

Anyway, I think after a couple of hours on the phone with multiple different people at multiple companies, my Ibrance may possibly maybe be all set to arrive from [Pharmacy 1] on time (God bless the insurance specialist at [Pharmacy 1] if this really dose come to pass, I think there must be a very special place in heaven for people who have to deal with people like me).

I'd feel a whole lot better, though, if I hadn't been told so many different things by so many different people at several different companies over the last 16 weeks, but we'll see.

As a kid, I loved the old Batman shows (and lived for the ones with Batgirl in them, because as a young girl in the 70's I was pretty hungry for a little Girl Power!)--they always ended the cliffhangers with "Stay tuned!  Same Bat-time same Bat-channel!"  In real life, cliff hangers aren't always as much fun, but I'm going to have to leave you with one, anyway.  Hopefully, my [Pharmacy 1] specialist is right and I'll have a fresh new bottle of Ibrance 75's in hand by Thursday--stay tuned!