Sticker Shock & Then It's All Good. (UPDATED)

My lung cancer cells have a genetic mutation (EGFR) that makes them a great candidate for a  drug called Tagrisso/osimertinib!  The studies show significant tumor reductions and lower spread for patients that tolerate it well.  It would be a chemo pill that I would take daily for the rest of my life (or as long as it works  - cuz cancers still mutate) - Good news, right?

Plus there is a 2 drug regimen of IV Chemo that I will also have to go through that will also increase my odds of living with lung cancer.  Remember Paul's Magic 8 Ball - "It is Certain" that I'd still be here in 5 years!  All of this chemo treatment starts next Wednesday April 23 - and I've had preparatory appointments and labs drawn all this week.

 So - here comes the sticker shock story!

For the Tagrisso, our health provider tells us that we have to call the special chemo pharmacy to get the ball rolling - coordinating our insurance etc...

It's after my doctor appointment and we need to stop at the store on the way home, so we decide to sit in the Zoo parking lot - and I call.

A very nice, sweet (almost sticky), polite woman tells me this:  

The actual cost is $8,061 for a 15 day supply - analytical me runs the numbers... That's $537.4/pill, $16,122/month, $193,464/year.  And that my insurance will cover a lot of that but not all - because it is a very good but a VERY EXPENSIVE drug.    

Then they proceed to tell us that our co-pay with Paul's excellent insurance will be $1,763.01 for a 15 day supply - here goes analytical me running the numbers.  That's That's $117.53/pill, $3,526.02/month, $42,312.24 per year. - Oh, and would I like to authorize payment at that moment?

And I'm thinking...this is just ONE of many drugs????

Paul and I looked at each other and literally choked.  We were speechless.  I start tearing up.  The irony of sitting in the Zoo parking lot wasn't missed either.

I spoke  up and said - "This is financially a lot of money - and this is just 15 days? "- I choked some more and said - "That's an awful amount of money - ongoing - please tell me you are kidding!"   - " I'm sorry" - she says (sickeningly sweet tone) - but you might want to call your insurance company."

I mean, we've always been very financially conservative and we're in good shape - but this is a lot when you feel like you have to pay to live or die.

Finally, she very politely tells me that Astra Zeneca, the manufacturer MAY have a patient assistance program to "help cover the costs"  - and gives me their contact info.  At this point it's the end of day.   Offices are closing.  There's no one to talk to.  We eat dinner and I tell Paul - this all has to work out.  This WILL work out.  He just stares out the window.  Neither of us slept.

The next morning I get on Astra Zeneca's website - I find the drug and apply for the patient program.  It's almost like a separate insurance card number. 

I call the pharmacy back and Boom - my cost $0.00.  Poof - just like that.  Relief!  Exhale!

Now - I think this is a way to financially coerce patients to agree to be part of Astra Zeneca statistical data sets.  In exchange, I think I've agreed to transfer all of my medical information to Astra Zeneca throughout treatment.  At this point - Who cares!

It's just another weird, crazy thing about all of this.  What if I hadn't questioned the payment?  Does everybody sign over their medical information?  Does everyone go through this emotional stress in addition to dealing with a cancer diagnosis?  It's all so surreal. 

I'm grateful that everything worked out - but it leaves all kinds of question in my mind.  What about unstable drug costs?  The patients are almost victims of the system.. at the whim of the system.  What about the people who maybe don't advocate for themselves or have someone to advocate for them.  It's all so weird and complex.  Both my husband and myself have benefitted from this system - both working in the industry.  So many complexities.  There never will be an answer.

Anyway - it's part of the unfolding drama from someone that hates drama.   I'm just glad it ended well.

So, I'm back to living life - celebrating along the way where I can.  Until the chemo starts next week.  I'm still tired - but celebrating JOY where I can.

Love ya,  Laura

UPDATE - 4/19/2025 - Since writing this, I've heard from a few people who have had similar things happen to them.  It's not something you hear about PUBLICLY. - so any of you real investigative journalists out there - might want to sleuth on this.

I want to keep folks anonymous - but 1 friend with breast cancer  paid the high co-pay for several rounds before actually finding out about the drug company patient assistance program - and I would only assume it's in exchange for her full medical records.

Another friend uses Skyrizi  - and had to pay thousands up front.  Eventually her insurance changed and now has to meet with a company "ambassador" every cycle - costs declined but, only because of this information exchange.

It's a manipulation of patients - in their most vulnerable state - by BIG PHARMA. 

Even though I'm thankful that the costs have been reduced - it kind of feels gross.  And this is just 2 people in the last 24 hours.  Not to start any conspiracy theories or anything - but it seems more like a common practice - that's not common knowledge.