Then HealthWell Foundation Ran Out of Funds for my Tagrisso Co-Pay

I never thought cancer drug crisis would be knocking on my door. In my five-year journey, everything had been rosy. I received charitable foundation funding for Tarceva straight away, got admitted in a clinical trial on first attempt, and was offered another foundation funding for Tagrisso without any effort on my part. Awesome things just kept falling on my lap.

Then crisis struck. I had just completed my fourth month on Tagrisso and called the pharmacy for the fifth month refill when the boom fell. We have a problem, said the specialty pharmacy employee (SP) over the phone. She continued, The HealthWell Foundation ran out of money to help you with your co-pay.

What? I recently recently donated to the HealthWell fund-raising campaign. Obviously the campaign did not raise enough money.  My pittance of a donation did not  not make a difference.

I asked SP, Will you ship my Tagrisso pills without receiving payment first?  I promise to pay as soon as I decide which bank provides the most conducive robbery escape route.  Of course not, she said.  You need to pay $101.85 in advance to cover your co-pay for the month supply.  The amount shocked me.  I could have used that to pay my smartphone bill.  I got to thinking, How much would it have been if HealthWell totally did not contribute? I asked SP.  She replied, $653.24 for a month’s supply.  My shock increased sixfold! I immediately paid the lower amount just in case the worse has yet to come.  UPS delivered Tagrisso pills to my home two days later.

To give me hope for the immediate future, SP told me she got financial assistance request forms from Astra Zeneca (AZ), the manufacturer of Tagrisso.  She gave the forms directly to my Onc.  He had to fill out a part and I had to do the rest.  To complete my portion, I had to request documents from the IRS to prove that I did not have to file income tax returns for 2016, the year my husband Octo died.  I qualified for filing exemption as a newly-widowed taxpayer.  According to the IRS website, most requests take 10 days processing time.

With exactly 13 pills left (of the 30 pills for which I had sprung $101.85) and a ten-day wait for the IRS response,  the co-pay subsidy situation seemed bleak.  Where would I get $7,800 a year for my co-pay?  I twiddled my thumbs then glanced at the mirror to see how my hair, which I’m letting grow longer, looked.

I kept wishing the IRS would reply faster so I could put its document in the envelop along with my financial assistance application and mail it to AZ before my Tagrisso supply dwindled to zero.

Then suddenly, out of the blue, my Onc Dr Smiley’s RN phoned and told me Dr Smiley received authorization to prescribe Tagrisso for me.  AZ will fill it for free! She added, All you need to do is drop by and sign a document.  I will fax it back to AZ immediately.

What?!!  Is another awesome thing fixing to fall on my lap?

I will keep you posted of the developments.  I have a very few Tagrisso pills left.

Do you have a similar situation? Let’s talk about it.


The Author,  Celia Ruiz Tomlinson, just figured out how to do a caption. Hah!







One Tagrisso Story

So HealthWell Foundation (HWF) had no issues with the Specialty Pharmacy’s application on my behalf for the $3K+ monthly co-payment of Tagrisso.  Within two days of hearing its name, I received HWF’s letter that screamed APPROVED on the heading! It told me to contact the Specialty Pharmacy to get the delivery of the pills started.  How can anyone not be impressed with such speedy service?

However at the same precise moment I also received a letter from the Specialty Pharmacy alarming me that the information in my file was incomplete and they could not finish the application process on my behalf and to call them as soon as possible to avoid delay! Fortunately, the recipient of the wildly conflicting messages is an awesome genius who completely understands the shortcomings of mere mortals. I picked up my smart phone and with a little tremble in my voice, feigned confusion, but in the end, simply asked, Okay, when are you shipping the Tagrisso? And the rep answered, Tomorrow. Be sure to be at home to sign for it otherwise the delivery guy will turn around and take the package back with him. I could not imagine the bureaucracy that would ensue if such an event happened. She gave me the tracking number, which I handily found in the UPS’ hi-tech tracking system.  It showed time delivery window: Between 6:30 a.m. and closing time, which was 7:00p.m.  I thought, Wow! That pins it down close enough. I spoke to a UPS representative and played a scenario for her when she couldn’t make the delivery window smaller:  What if I wait all day and it’s already 7:00p.m. and the package has not yet arrived?  She replied, That means there are too many deliveries and he’ll keep delivering packages until you get yours.  That knocked me for a loop.  I had bought my tiny manor in the retirement-resort-living-at-its-best to sunbathe near the hot whirlpool or rub elbows with fun people at events during the day, then sleep in the manor at night. Pacing the manor carpet for 12 straight hours had never occurred to me.

Living alone, I had no choice but to hang around the manor to wait. It happens when the Diva’s days of delegating tasks are long gone. So wait for the UPS dude, I did. I was sure about the dude thing because I have never received a UPS delivery from a dudette. Finally, at around 5:00 p.m., my hero came bearing the package. He gave it to me in exchange for my signature on his hand-held computer tracker.

I tore into the corrugated carton box like mad and found (1) a plastic bottle containing 30 Tagrisso pills inside a see-through plastic bag marked Chemotherapy and (2) Product literature – everything one ever wants to know about Tagrisso: side effects, conflicts with other drugs,  the sun, people, etc. I had a major concern: What about wine or beer? It said, Limit alcohol consumption. Aha! There’s a margin for tolerance. I liked that.  I had another question: When is the best time to take Tagrisso? It said, Take it once a day at the same time everyday so you don’t forget it. Take it with or without food.

It was almost 6:00p.m. and a hot deliberation was raging in my head.  Should I take the first pill now? Why not? What good does it do to wait for tomorrow? I remember reading that tomorrow waits for no one. The literature said one of the reported side effects is shortness of breath. What if I have shortness of breath while I’m snoring? I could wake up dead in the morning! Maybe that’s the reason to wait for crack of dawn, take the first pill, then have all day to monitor side effects like dizziness, nausea, diarrhea, shortness of breath, yada, yada. Nah. Why did the Tagrisso docs not express themselves exactly against taking the very first pill at night?  All the pill container said on the label was, This drug may impair your ability to drive or operate machinery. No prob. I had no immediate plans to operate a backhoe that night. It also said USE CARE until you become familiar with its effects. Define CARE.  I concocted a couple of lame definitions that lead me to the eureka moment: Today is the day. Tonight I take my very first pill and henceforth every 6:00p.m. every day.  I bravely swallowed one 0.5cm x 1.5cm 80mg oval pinkish pill, chug-a-lugged a glass of water, and plastered a smile of satisfaction across my face.

Just before I hit the sack, I remembered something –  to allow for some drama should shortness of breath occur in the middle of the night. When I laid me down to sleep, I positioned my arms like an X on top of my chest a la Cleopatra minus the crooks.

Around 3:00 a.m. my  stomach growled and woke me up.  I was starved.  It happens when my blood glucose is around 75 or 80. My body talks to me, I listen and obey.  But wait! As I was walking to the kitchen to fix me something to silence my stomach, I remembered the very first Tagrisso coursing through every cell of my body.  Was I having side effects? Obviously I did not have a shortness of breath but a shortness of chow! Maybe something else had happened. I rushed to the bathroom and inspected my body for signs of side effects that I had read from posts at Inspire.  Rashes on the face or body? None. Headache? Dizzy? Pain? Nope.  Grandma Honey had written about her eyelashes growing long, like they did on Tarceva.  I inspected mine, ready to bat them shamelessly if they had grown a millimeter during the past 9 hours. Nothing there. Finding nothing untoward, I devoured my midnight snack and crawled back to bed.

I’ve been on Tagrisso for half a month now and have seen zero side effects.  Nothing. No nausea, headaches, diarrhea, rashes, shortness of breath, dry skin, cracking nails, mouth sores. Nothing. I wonder if Tagrisso is doing something or just sitting there. That’s the same thing I said during the first four months of zero side effects on my CO-1686.

That’s my Tagrisso story. I’d love to hear yours, if you have any.

The Dawn of a New Day

During my recent lung infection event, in consideration of others, I went on a self-imposed quarantine, remembering the disgusting sound of a hacking, loaded, incessant cough in a fine dining restaurant. I took plenty of rest and did only the minimum work required of me, like taking to the trash bin bags of yucky germy tissue papers. Waking up cough-free the other morning, I proudly declared: Today is the day. No more Ms Nice Guy in isolation.  Society, here I come to whoop it up again. It starts today!

At 7:00a.m., spring restored in my steps, I sashayed from the bedroom to the Great Room and sat down on my favorite dining chair, the one near the chair of my roommate, my backpack. I tested my blood glucose. Perfect. The numbers have been perfect since I stopped taking Poksceva one week earlier. What a relief it was to have no Metformin and hyperglycemia kicking me around any more.

Sipping hot peppermint tea between nibbles of soft-bite mini almond biscotti, I decided to ratchet up the celebration of the brand new day with a healthy, hearty breakfast: six fresh grape tomatoes for my dose of lycopene, three points of New Zealand rack of lamb for protein, fresh blueberries, sweet cherries, and apple slices for vitamins and potassium. For carbs, instead of a baked potato, I had a bag of baked crunchy Cheetos. Hey, gotta have a little junk food. Life is the pits without occasional junk food.

While savoring the gourmet meal in solitude, all sorts of thoughts cascaded into my mind. It happens when one blog ends and a new one begins.  One cancer treatment ends and a new one begins. So much is unknown in the new ones, although one constant remains. In life, cancer or no cancer, conking out sooner or later is an absolute certainty.

I have been without cancer treatment since I stopped taking Poksceva and not starting on Tagrisso.  A representative of the specialty pharmacy that sells Tagrisso had informed me that my co-pay would be $3,274.38 for one month supply. I told her, I’ll pass. And choose to literally pass. My personal wealth can be best used in the perpetuation of my DNA, as in sending my grandson to the Ivy League college of his choice, should there be a bidding war over him. She had scrambled to try to get the manufacturer to take care of my co-pay.  Consequently Dr Brevity received forms to fill out and I had to produce proof of income. Who knows how long before the good doctor gets to my paperwork and if my proof of income qualifies for assistance.  There are no guarantees. My newly reactivated tumor is a ticking time bomb.

A telephone call interrupted the swirl of thoughts in my head.  It was the specialty pharmacy’s representative. She said a foundation – Healthwell Foundation – wants to assist me. She asked a few personal questions, then for my permission to allow her to fill out the application form on my behalf. After it is approved, she said, usually within 48 hours, she’ll ship my supply of Tagrisso pills. How did I get such an incredible deal?

Drum roll please…..A new day has dawned!