Revisiting “10,000 Views”

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TO-DATE STATS: Big deal at the moment

I remember the arrival of the 10,000th view of my blog. It got me so excited that I updated the blog with a post about the 10,000th read.  Now that I have published a total of 88 posts as of today,  I realize I was blissfully amateurish then, especially after someone recently asked me if the blog was getting 1000 views a day!  But I had a great time being an honest newbie blogger.

There’s beauty in honesty.  I remember when our high school newspaper adviser selected me, a mere columnist/reporter,  to be an alternate delegate in the event one of our school’s seven editors could not join the delegation that would sail to a national secondary schools press conference in the southern Philippines.  The prospect of being on a boat bigger than a canoe for three days on the Philippine Sea –  something I had never experienced – excited me endlessly.

As instructed I packed for the trip.  It was pretty cruel, really, to order me to pack to go nowhere unless one editor became ill.  I wanted to go so bad I could taste it but I did not want anybody to get sick.  Why did my 16-year-old life have to be so complicated?  So on the delegation’s departure day, there I sat in the house, waiting for word on my fate as a future awesome journalist.

Oh dear.  As fate would have it, the flu bug sickened the society editor.  Consequently I was notified of my life’s purpose that week! My parents rushed me in a public jeepney to the port to board the boat at the last minute.  My school’s healthy editors’ dim view of my sudden appearance on the scene was palpable.

I was like a Beverly Hillbilly on the boat.  After all, I had never been on one, never been in any other island on the map, never been a delegate – a total hick from the sticks.  My mouth was probably agape all the time in silent wonderment.  Everything amazed me – the aging boat, the measly food, the cots for us to sleep on, the help, the diversity of passengers, the balmy sea breeze, and myself.  I was in total disbelief of my presence there!

At the conference, competitions were held among us budding writers from high schools all over the Philippines.  Our adviser entered me in a feature writing event.  I wrote with unabashed honesty about my awe of the three-day boat journey.  Perhaps the judges found unsophistication, naivete, and honesty so refreshing that they awarded me a bronze medal.  Hey, that was third prize – after gold and silver!  Correct spelling and grammar probably did not hurt either.

Okay, where was I on the blog stats?  I honestly got sidetracked.

According to the blog site statistics that readers don’t see, five (5) posts stand out as the most viewed out of 88 posts over 40 months.  Who knows who the readers are, but it would be safe to say they are mostly cancer patients and caregivers looking for answers.  The rest are lurkers and cancer drug investors.  The response exceeded my expectation. I had only decided to blog to inform family and friends about my ongoing fight against the malignant tumor at the bottom of my left lung and the unknown tiny spots too many to count scattered throughout both lungs.  By so doing, I could avoid repeating my answer to the persistent question: How are you doing?

The statistics tell a story.  I have my own take, too, on why the 5 blog posts attract the most all time viewers.  Like all the other posts that did not make the top 5, they are written in humor. They can be found in the archives.

Following are the top 5 and why:

No. 5 About Celpeggy

Readers want to know who is this blogger? What does she know? What makes her tick?  How can she write in such a style?  What’s her problem?

No. 4  Cancer Diagnosis is not a Death Sentence

Don’t we all look for hope and reassurance that we are facing a situation that is not insurmountable!

No. 3  My CO-1686 Stoke that Appetite!

Loss of appetite is universal.  Based on experience, this medical marijuana account is very honest and extreme honesty can bring about hilarity.  A caregiver, a Hollywood comedy writer, told me after reading it, You are a very funny girl.   You’d think she saw me in a string bikini.

No. 2  Tarceva Resistance – When It’s Time to Move On

Sooner or later, cancer cells outsmart the drug that’s targeting them.  Newly diagnosed patients and their caregivers want to keep one step ahead.  We’ll revisit this topic.  It could have been done better.

No. 1  CO-1686 First Scan CO-1686 Vs Diva’s Lung Cancer

This is a one off.  June 4, 2014.  One investor in the CO-1686 drug was following my blog.  When my first CTscan after six weeks of Poksceva (my tongue-in-cheek brand for Rociletinib) showed great promise as the drug for the T790M mutation of EGFR, he twitted and his tweet went viral in the investment community, sending my stats completely out of the chart.  Unfortunately, the CO-1686 trial was eventually discontinued.  I don’t know if the investors lost money, but that’s not my problem.

Thank you for your support and patronage.  We are meant for each other.  Which topic would you like to revisit?

 

 

 

 

 

 

 

 

 

 

 

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Insurance Company Denies….(Cont)

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TEAM GRANDS – Grandma Author and Grandson Oskar, 11, all thumbs up. Failure is not an option

The SECOND payment denial by the Insurance Company (IC) hovered like a dark cloud over my head. The new 60-day appeal filing period had just begun and the sense of urgency had not yet grabbed my attention. If the dark cloud meant rain, I felt like I could do a hippy hippy shake speed walk and still have time to find me an awning that would save me from being drenched. Of course I did not know how much money I was supposed to spring if I eventually lost the appeal. Maybe if I knew, I’d be flying! But paying for something that I shouldn’t is not an option.  Failure to prevail is not an option.

Two weeks passed and I decided I had lived dangerously long enough. It was time to rattle Dr Brevity’s RN.  I went on a messaging spree with the RN through the Patient’s Portal. Okay, that’s grossly exaggerated. I fired exactly 2 messages in a row over a span of 2 days. Exaggeration happens when the Patient/Blogger suddenly forgets her coolness and magnifies everything.

My first message read: I received IC’s Notice of SECOND denial of payment based on the information provided by you.  I agree with you that your submittal was responsive to IC’s requirement to reverse the denial.  Now the new and improved reason for denial was “When you enrolled in a Medicare Advantage Plan, you selected a Primary Care Physician to coordinate/authorize your medical care. The services received were not authorized and not payable by Monarch.”  Please continue to represent me to Monarch.

I did not receive a response.  I sent another message.

My second message read: Please let me know what action you intend to take.  IC gave me another 60 days to appeal the SECOND denial.  I don’t want to lose that opportunity.

I still did not receive a response.  The following day, I gave up being Ms Nice Guy. I reached for the phone.  After all sorts of mysterious phone connection motions at Club Med, RN and I finally found our voices.

RN:  Celia what do you need?

Me: Did you get my messages at the Patient’s Portal?

RN: No I did not.

Me: The long and short is, I got a Notice of SECOND denial of payment.  All I want to know is if your office intends to continue to represent me.

RN: We already gave IC what they needed.

Me: In other words, your office is through helping me.

RN: There’s nothing more we can do, but I can call Guardant and ask for Patient Claim Assistance.

While we were talking, she found my messages.  She did not see them because she had not turned on her computer since her return from vacation.

Anyway, I thanked her for everything she had done to help me and proceeded to call the number that Guardant gave me if I needed help in filing the claim. The phone rang.

Voice on the other end: How can I help you?

Me: Please connect me to Client Services.

Voice: This is Client Services.

Me: Oh, you are Client Services.  My contagious laughter roared.

Voice: (Laughing, from contamination). Yes I am.

Me: I need help to file a claim.

She asked for identification, date of birth, yada yada.

Voice: OK I found your case file.  We received the same Notice that you received.  I’m glad you called.  But first I want you to  know that win or lose the appeal, there is a fixed fee you must pay.

I felt my hackles kind of lift from the back of my neck.

Me: How much?

Voice: 60 dollars

Me: Come again please.  I want to be sure you did not say 6K dollars.

Voice: 60 dollars

I laughed.  And she laughed.

The appeal is supposed to be a lengthy process.  I hope everybody lives long enough to see the end of it.

(to be continued)

Is there any experience out there like this? I’d appreciate input.

 

 

 

 

 

 

Revisiting “To Tell or Not to Tell”

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Three generations in Laguna Beach clockwise from left: son Thomas, the shy Author, and grandchild Oskar, all permitted to tell if they think they should

When I was a new blogger, one of the earlier topics I posted on was titled To Tell or Not to Tell wherein I discussed the stigma of cancer and patients’ dilemma whether to tell or not to tell others about their affliction.  I wrote that I had emailed my two sisters – the eldest in Manila, the youngest in Dallas – after a series of tests and imaging that the diagnosis of the tumor in my left lung was cancer stage 4.  Immediately their emails came to a screeching halt, leaving me baffled.

For days, in order to deal with the shock of my diagnosis and my sisters’ abandonment, I scoured the internet and educated myself on cancer. I found Inspire.com and read it voraciously. Finally, I figured out why my sisters simply stopped communicating with me. At first I let them stay quiet.  Consequently I enjoyed the relief because those women talk too much. Okay, in fairness, I admit I do the same. That’s what we do – give each other earaches .

Then one day, I broke it to my siblings gently. I told them I learned from my research that people react differently to news of a loved one having a cancer diagnosis. Some stop communicating because they are uninformed about the dreaded disease.  They simply don’t know what to say to a person with cancer. I had barely hit the Send button when their emails rushed in. They thanked me profusely for breaking the ice. They said they had friends who did not want to be contacted after they received cancer diagnosis.  They figured I’d have the same attitude.  What were they thinking?

I have personally chosen to tell the world through blogging that I have lung cancer, once with cancer, always with cancer, but there’s always hope.  It is my way of giving back – informing and enlightening cancer patients and caregivers – after surviving the 2012 dire prognosis of 8 months to live.

Last year, faced with a second widowhood after 8 years of remarriage, I decided to stay in the retirement resort in Southern Orange County, California where the tragedy happened. I thought, That’s it. What man would be interested in a twice-widowed senior chick with lung cancer stage 4? Forget them! I’ll join the Foodies club, Cannabis Club, Hiking Club, etc. and fill my cup.

Hey, never underestimate the power of a senior string-bikini babe!

The over-55 retirement community’s latest demographic report states there are 6 men for every 10 women in the resort.  I disagree. In the sphere where I move, there are 4 men to 1 woman.  Of course the sphere is super small, as in a corner of the hot whirlpool where we meet every weekday evening to tackle the world’s problems.  As an engineer in my past life, I blended in easily.  One of the men sees me outside the pool at other times and we discuss exciting things like Bring Your Own Everything (BYOE) dances.  I have occasional lunches with another man from another sphere.  A teetotaler and a zero conversationalist, he rants about politics and gives me an earache.  Win some, lose some.

Both seniors asked me, separately, How do you keep busy?  My answer: I blog. About what? they asked.  My answer: About cancer. I am a cancer survivor.  Wouldn’t you know! Their next words surprised me.  Both of them turned out to be stage 4 cancer survivors – prostate for one, skin for the other.  They told only because I told. I told because I had to.

So there we have it.  I still tell.  And telling has consequences, like learning I am not alone, hearing other survival stories, political rants, BYOE dances, etc.

How about you?

 

Insurance Company Denies Payment (Cont)

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Remaining Cool and Unstressed and Saying, “Whatev!” 

I don’t know why nothing is ever easy for me. For a moment after speaking with Dr Brevity’s RN, everything about the appeal of the denial seemed under control. RN had explained to me that appealing denial of payment is one of the things her office does routinely. She said, Just FAX to me the Notice of Payment Denial and I’ll take it from there. Boy, howdy, I’ve got ’em now!

 

The insurance company (IC) has given me 60 days to file my notice to appeal, so after Faxing the Notice of Payment Denial to RN, I marked on my calendar the 30-day half-way deadline and the 60-day drop-dead deadline to make sure I don’t lose my opportunity to appeal.

Awakening in the morning after an evening of July 4th fireworks and a hot dog loaded with topping, I glanced at the calendar to plan for the next  BYOE (Bring Your Own Everything) dance.  What I saw instead alarmed me.  The 30-day half-way deadline lurked only a week away! I thought I better get RN’s status report.

I sent a message to RN through the Patient’s Portal (PP), asking very demurely about the status of our appeal. No sooner after I hit “send,” a notice that there was a new message from the PP yanked my attention.  RN’s responsiveness was awesome!  But my computer, my cellphone, was way too slow because I insist on not buying any more data from the provider.   I could hardly wait for the next day to come for me to go to the computer room to read the message.

The message said: Hi Celia, this is Noreen (changed to protect her privacy), RN.  Dr Brevity’s RN won’t be back for two weeks.  Can you tell me what the denial is about so I can find it?

I was floored!  It’s a good thing I’m cool.  And retired.  And only halfway to the drop-dead deadline.  With nothing else that’s earth shattering to do, I have time in my hands to be mischievous.  I responded to Noreen RN deliberately and methodically, giving her a blow-by-blow account of what transpired between RN and me.  I must have given her information overload!  I haven’t heard from her since.

Left to my own devices, at least until RN returns in two weeks, I went ahead and wrote a letter to IC in strict accordance with their instructions, of my intent to appeal their denial of payment.

Four days after mailing my intent to appeal, I received the SECOND denial of payment.  Obviously Dr Brevity’s staff had already appealed and provided IC all the material needed.  Remember, IC’s reason for the FIRST denial of payment was non-receipt of said material.  Now IC has a new and improved reason for the denial!  The SECOND denial letter said When you enrolled in a Medicare Advantage Plan, you selected a Primary Care Physician to coordinate/authorize your medical care. The services received were not authorized and not payable by Monarch.

I have a good argument, i.e. time frames, etc, with that reason for denial, but IC gave me a new 60-day window to file a SECOND appeal.   Serious stuff!  I decided to go to the swimming pool and upgrade my wading capabilities.  But first, a selfie.

I’d love to hear how you handled your similar situation.

(To be continued)

 

 

 

 

An Appointment With the Gastroenterologist

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The Digestive System – One of the Great Equalizers in the Human Race

Between my Oncologist (Onc) and my Primary Care Physician (PCP), I have had more appointments with specialist doctors than I can remember. It’s probably a good thing because I’ve learned a lot.  Now I can decide which branch of medicine I’d major in when I grow up.  At the same time, going to and from these doctors and writing about them give me something to do, write about, and share with those who give a hoot.

The latest medical specialist who examined me was a gastroenterologist (GE), a doctor specialized in the human digestive system, which includes the esophagus, liver, stomach, gallbladder, pancreas, large intestines, small intestines, appendix, rectum, and anus. It makes me wonder, After dealing with those body parts steadily, does the good doctor eat soul food such as chitlins or the Filipino dish called “dinuguan?”

I am not a hypochondriac preoccupied with my and only my own health issues.  My Onc had sent me to GE after the liver MRI specialist already declared there’s nothing wrong with my liver, in agreement with the CTscan radiologist.  But no!  My Onc had a need to  know why a portion of my common bile duct is distended, even after I told him I’ve had that since the CO-1686 clinical trial three years ago and Dr Brevity never got excited about it.  But Onc insisted, so off to GE I shuffled for my appointment.

What can we do for you today? asked the 20-something intake aide.  I thought you’re going to tell me, I replied with a smile.  She flipped through my record.  It’s hard to find something if one does not know what one’s looking for.  I asked her, Are you the Physician’s Assistant (PA)? The PA, like the Nursing Practitioner, is the closest thing to being a doctor.  Oh no, she said.  With nothing else to do, the intake aide asked me my weight and height, told me the PA will see me in a few minutes and then took off.

The wait for PA was more like 45 minutes.  I suspected she was studying my medical records.  PA, a 35ish Chinese beauty, came in seemingly happy.  She had figured out the purpose of my appointment!  It’s your common bile duct, she said. How long have you had that condition? Three years, I answered. She asked, And you’ve had no symptoms? Like, your urine is not cola colored? Your stool is not pale? To all her questions, I answered “no.”  She instructed me to lie down face up on the examination bed. She poked hard at various points on my tummy to elicit a scream or screams.  No screams occurred because nothing hurt me other than her painted fingernails.  Finally exasperated, she said, I think an invasive procedure to find out what’s wrong with your common bile duct should not be done.  It will do more harm than good.  But I’ll ask GE. He has the final say on this matter.  I’ll phone you as soon as I find out his decision.  Great! I exclaimed. I resisted the urge to do a somersault to celebrate.

Do you drink alcohol? She asked as a parting shot.  I answered, Yes, once a week at a dance in the retirement resort.   It sounded like an innocent confession.  Of course I minimized the fact that the dance event features a live band and BYOE or Bring Your Own Everything, which is wide open to interpretation, as in bring your own everything from the cellar.  Thank goodness the dance is only from 6:00pm to 9:00pm.  With the resort’s bus limo service, I make it to my manor upright every time.

The next day, PA phoned and told me GE said there’s no need to do anything with me.  I said, Yes! and pumped my fist in the air.

Let me know what you think about GE or the weekly BYOE dance.

 

 

 

Insurance Company Denies Payment

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Not a Pretty Picture!

 

My life is filled with conflict.  Fortunately, I dig conflict.  Being a self-proclaimed Drama Queen, I thrive on conflict.  Conflict becomes me.  Okay, you get the drift.

When it became almost clear that rociletinib, the CO-1686 trial drug aka poksceva, had started to differ with me as to its purpose in my well-being, my awesome Onc, Dr Brevity, decided to requisition the services of Guardant.  Guardant is the noted high-tech company that analyzes human blood to determine the types of mutated cells that are coursing through the veins of a cancer patient.  Dr Brevity said he wanted to know what happened to the cancer cell that was once identified as T795, a mutation developed out of my EGFR in exon 19 deletion to resist Tarceva.  Cancer cells do learn to outsmart cancer drugs!

I asked for the results of Guardant’s lab analysis as soon as it became available.  Like the Good Doctor, I wanted to know what new nasties were parading in my system.

I read the report with great interest.  The only problem was, I did not understand a thing about analysis of DNA, genes, and molecular pathology.  Well, what do I know about molecular pathology? I’m a civil engineer; I’m into sewers.  But I got the hang of what the report was saying: Those analysts did not know what to make of the results either because there was not enough material in my blood, consequently, they did not know what treatment to recommend.  So, now, a whole slew of us including Dr Brevity, the analysts, the CO-1686 trial sponsor, its employees and associates, and me, know more than what we did before Guardant came into my existence.  Zip, zero, nada.  And my insurance company put me and only me on notice that they will not pay for the lab’s analytical services.  In other words, you, Ms Senior String-Bikini Babe, shall pay.  The scenario reeks with conflict of interest!  The insurance company’s interest in my funds conflicts with my interest in not paying for anything whenever possible.

Well, I happen to be a veteran of conflicts.  In public events, when the emcee asks veterans in the audience to stand up and be recognized for their patriotic service to the country, I attempt to join those who rise, but a companion always pulls me down and puts me in my place.

I read the letter of the insurance company word for word and found I have 60 days to file an appeal.  I can name a relative, friend, attorney, doctor, or someone else to act as my representative.  The most logical representative is Dr Brevity because he was the reason for the payment denial, which, by the way, was given:  Medical records requested were not received.  In order to determine financial liability or medical necessity medical records are required to assist in a clinical determination. As these records have not been received, this claim is not payable by the insurance company.

It was my turn to put somebody else on notice.  And I did.  Voila!

(to be continued) 

I’d be glad to hear your experience if you have any on insurance payment denial of Guardant’s services.

 

Felt a Lump, Blamed Cancer

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Cancer’s only redeeming value is that it comes in handy for blaming anything that goes haywire.  I have blamed cancer for everything from aging to zhingles.  I know, but shingles spelled correctly won’t cover the whole alphabet spectrum.

My most recent addition to the blame-cancer game is a lump on my left arm near the shoulder.  I noticed it one day while soaking in my five-minute vitamin D quota from the toasty Southern California sun while seating on the only patio chair in front of my privacy-walled minimalist manor.  At first I stared admiringly at the lump, delighted that I was getting some muscle definition.  But when I looked at the same area on my right arm and saw nothing there to balance it,  the lump raised my suspicion.  I didn’t think it suddenly appeared but I didn’t know how long the lump has been there.  I had been too busy taking selfies.

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At first sight of the lump, the author celebrated her new muscle definition, or so she thought!

I immediately blamed cancer, returned to my alma mater, Google University (GU) and revisited my mentor, the founder himself, Dr Google.  I asked about “lump in my left arm near the shoulder.” Sure enough, other alumni had already inquired about it.  How dare them debunk the myth that the Senior String-Bikini Babe is an original!

Dr Google had a few things to say about the lump. Its location, appearance and texture based on what I saw and felt, describe LIPOMA, a slow growing usually harmless, painless fatty lump that is most often situated between the skin and the muscle layer and located in the neck, shoulders, arms, and other areas that did not matter anymore after reading the shoulders and arms.  Any one can get Lipoma at any age.  It requires medical diagnosis because the lump may be LIPOSARCOMA, which looks similar but is bad news. I threw some more questions. Dr Google’s answer:  Enough already!  Stop self-diagnosis. See your doctor.

Grudgingly, I contacted my Primary Care Physician (PCP), a gerontologist who makes a living looking for as much wrong as he can find in me. Of course he has his RN for his first line of defense.  I described to her my GU findings.  She said she would ask PCP.  After conferring with him, she connected me with a surgeon, another young handsome Southern Orange County doctor.

Three days later,  I faced the good doctor, Dr Han Sahm.  The name sounds fictitious because it is, to protect his privacy.    Obviously he had already heard from RN everything about the lump.  He jabbed the lump with his forefinger, pushed it around and declared it 99.99999% not cancer. I said, So there is that 0.00001% it is cancer.  He said, I have operated on thousands of this over five years and the results have been 100%.  You have two options: (1) Remove it, or (2) Do nothing but watch it for some time and if it starts to bother you, we’ll remove it.  It will take only minutes.  My decision came swiftly: Let’s wait until it becomes the size of a cantaloupe then do the liposuction.  He laughed, We don’t want to wait that long. We want the procedure to last only minutes.

So there’s my lump story.

Tell me your own lump story, if you have any.

 

 

 

 

 

 

Serious Blogging 101

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Work in progress under the two lemon trees in front of the author’s minimalist manor Seriousness needed here,  too

Ignorance is bliss. Not knowing is a blessing. Those are my crutch, being the new kid exploring the SEO block. Okay, SEO is Search Engine Optimization. I love my new capability to flaunt little blogging knowledge.  I am getting dangerous now.

I noticed on the first day of publication of the post “Ever Wondered How it Feels to Wear String Bikini,” a Victoria’s Secret ad appeared immediately after the article and photo.  I related this to a friend, an SEO genius. He said the Google bots –  short for robots – did that. Bots are developed to sense in a blog what sells, what ever.  Obviously, string bikini suggested sex.  I seriously was not thinking sex ads, especially ones that don’t add cents to the balance of my bank checking account.  Then I notice the ads change daily and they are all suggestive of something, not just sex.  Sometimes no ad appears.  Who knows what the bots have in mind. Or in their metal heads.

Now I know.  A little.

HealthWell Foundation Ran Out of Funds (conclusion)

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Okay, so the Onc’s RN said all I needed to do was drop by their office and sign the document and she’d FAX it right back to Astra Zeneca (AZ), manufacturer of Tagrisso. It sounded so easy. But as it turned out, my “drop by” would be fraught with difficulties, most of them my own doing.  Difficulties are good. They sure make my accomplishment seem more epic.

True to my minimalist lifestyle, I have been without vehicle now for 10 months. I’ve mastered the retirement resort community’s bus system. I took my maiden solo 15-minute trip to Laguna Beach using the Orange County Transportation Authority (OCTA) bus and it worked. I found the way back to my manor on the same day! Buoyed by my initial success, I decided to use OCTA to drop by the Onc’s office, which is in another city. The other option was by taxi. The big difference in the cost of the round trip drop-by: $50 by cab vs $1.50 by 24-hour OCTA bus pass.  I could definitely use the savings to buy me a new string bikini swimsuit.  Priorities, priorities.

I planned the trip.  Actually the OCTA website did the planning complete with maps and instructions.  I packed cut-up apples, cashews, and cheese cubes for snack in case my blood glucose ran low while I was in the middle of nowhere. And of course water. All set with my roommate the backpack carrying the goodies, off we went to the expedition.

It seemed like I was hopelessly lost. I did a lot – and I mean A LOT – of walking to correct my navigation errors.  Finally I made it to the Onc’s office, signed the paper, and headed for the bus to go home. Got lost some more. If I straightened out the path that I had walked, I probably would have reached Canada. But it was so worth the experience and the mission accomplished.  Always in awe of the bright side – that’s me.

The following day, AZ phoned and let me know the application FAXed from my Onc’s office was incomplete. Oh no! Over the phone she and I completed it. The next day, she phoned me again this time for the good news: I am officially in the co-pay assistance program: no need to wait for the IRS document, no need to file my application, no need to call for my refills which AZ – not the specialty pharmacy – will ship directly.  How awesome is that! As I wrote this post, I had exactly 5 Tagrisso pills left. The shipment was supposed to arrive any day.

Saved by the bell!

Please feel free to share your drug co-pay story, if you have any.

 

 

 

 

 

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

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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.

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