This week I had to accomplish two gigantic things – I had to get two of my medications.
Pausing – I am working on my approach. I try to be proactive. However there are time constraints and limitations; the insurance companies will not fill or process in advance.
I still need to work on my approach. I need to be kinder without getting run over.
This blog is a little longer than normal – it is how the story goes.
Vertex pharmaceuticals dropped the ball, or my doctor’s office dropped the ball. Nonetheless – I did not have a prior auth and needed to get a prior authorization for my Trikafta, I needed it filled and delivered this week – a holiday week.
I started the leg work overall week ago on Friday Dec 17th. That week I should had probably heard from the distributors of Trikafta and Cayston, and it was silent.
I made follow-up calls on Monday, then took a break on Tuesday. Called again on Wednesday and then Thursday on all fronts: Optum Rx (the pharmacy provider), Accredo (the pharmacy filler and distributor), and my doctor’s office.
I called on Thursday December 24th – still no prior auth. My patience was descending and my blood pressure was rising.
Stick to the facts – that is what my friend, Amy, always says. So – I called my doctor’s office and stated exactly what I told you above. I asked Please can you call the prior auth number, and can you please call me – if you could kindly do so, when the verbal has been called in.
Tip: providers can call-in verbal prior auths. That is not always known, not public knowledge.
When calling my doctor’s office I added that I was misinformed, and I thought the PA had to be sent to Accredo, but it is actually Optum Rx, so that is my fault and I apologize. And then I repeated my request adding the extra please.
Tip: Always say you have less medication than what you do, because these companies will push you to the edge. I always say I have 7-10 days less than what I have on hand – that is what I did in this case. Depending on the medication, I will say up to 14 days but that is often for a 3-month prescription.
That extra time can get eaten fast.
My provider called back and left me a kind message and said they sent the verbal in and how many months my insurance approved the medication.
I got the PA communication letter in my Optum email box with the approval date.
Great! I called Accredo and they had not received it over the last 3 hours. Fine. Set aside until the Monday Dec 28.
Upon waking, first cup of coffee down – I picked-up the phone and called Accredo. They have not received the PA from Optum.
We should be hearing from them soon.
One of the weakest sentences to exist.
Remember Wimpy from Popeye:
Same sketch.
I have the PA number here –
We do not except PA numbers from patients, but I can take it down just to have. We need to hear from Optum.
I get it. I hung up and called Optum.
We don’t talk to the pharmacy distributors – they need to contact us.
I just spoke to them and they said they need to hear from you.
We don’t do that.
I am not exactly sure how this is supposed to work. However, I have an approval – you have it there on file. Accredo says it needs to hear from you and you say you need to hear from them. So – how about we talk to them together for I am not in the middle.
Technically – I don’t think they “talk” to each other but their technologies do.
I have their number here – She states the number.
That is what I have. I am not calling them again. They will only repeat what I just told you.
Why is the customer always caught in the middle? This isn’t your fault, but this is a constant occurance. Two companies, Accredo and Optum who need to speak to each other – who have the correct information, who literally just need to share the info with one another, while I am the one is trying to link the missing info; the one who NEEDS the medication – the customer. I need it not next week, this week. Jan 5 – is too late.
That is the date they gave me to provide the time to communicate. In real time, Jan 5 would be my last dose I have on hand. Pushed to the edge.
Let’s call them together.
Silence.
Can you hold please while I give them a call?
I would be happy to.
At one moment the rep said that I was filling it at the wrong pharmacy. She stated the last pharmacy, six months ago that I filled it. I said, Oh no, I filled that there for years and then Optum decided to change distributors and said I can no longer fill there.
Oh.
The phone call proceeds to go on. Some place in the middle – Accredo can’t find me and say that my medication has been denied due to cost of med and insurance.
Hold it – (the three of us are on the line) – may I ask which account are you looking under? Silence.
In the past, and I am guessing currently, as I have asked for this to be fixed – THERE ARE 3 ACCOUNTS IN MY NAME. That is like having three medical records numbers.
Depending on who picks up my name, they are probably picking up my inactive accounts – that do not look inactive; where there is no insurance attached to the account because they are old.
They are from years past – different contracts, different insurances over the course of the years. This has caused considerable problems, considerable miscommunication I imagine between departments, and considerable delays in getting my medication.
This needs to be addressed. Can you hold?
The rep said a name and put me on hold for a considerable amount of minutes.
I would be happy to.
The call goes on – PA exchanged, shipment date exchanged.
We will overnight it.
Perfect.
I am so sorry for this miscommunication today. Is there anything else we can do for you?
I thank them indubitably, and say that I am good and thank all of them for their time. At one point, there were four of us on the call. I hang up, 57 minutes on that one phone call.
Exhale.
I pick up the phone and call my doctor’s office and ask for a new script of Cayston to be sent to CVS Caremark Specialty. I had done the leg work on this one a week prior.
The week before I called CVS Caremark specialty and they didn’t have any record of me.
Optum could not find or figure out where I was supposed to fill Cayston.
I had filled it at least 3 different pharmacies in the past. However in my phone I have “CVS Caremark Cayston” and date – so I know this is where I filled it last.
Overtime with the contracts there are only so many distributors and they change which ones carry the meds. I have 3-4 heavy hitters, and overtime they rotate around Walgreens, Accredo, CVS, IV solutions, et cetera.
So through the years – I have, in fact, filled each one at one of these pharmacies. It’s a merry-go-round.
You have to know where your feet are and where they land.
I just filled Cayston at CVS Caremark Speciality but they can’t see the history.
Optum is unsure where I fill it but Think it may be CVS.
I believe it is CVS.
They fill Cayston. I would start there.
Oh that’s wonderful. I will start there. My God.
CVS on a whole is quite remarkable. However, they are so big and there are many subdivisions.
CVS
CVS Specialty
CVS Caremark Specialty – specialty, specialty: MS, CF alike.
When I call CVS Caremark Specialty they often say CVS Specialty. They are not the same division. I have to ask – Is this CVS Caremark?
On my online CVS and CVS Specialty accounts, Cayston is not listed. It has never been listed. Caremark medications do not appear online. It is like placing an imaginary order to Amazon.
My doctor’s office sent the Cayston script right away. I got a text quickly from CVS that it was ready to ship.
After all of this – I left a message on the voicemail of my doctor’s office and thanked them for sending the Cayston script and thanked them for the verbal PA and for calling me back and for leaving a voicemail. That I know that all of this is unbelievable amount of work and that I appreciate everything they do.
For clarifcation: I keep an organized sheet of my meds and pharmicies – except I didn’t keep the label on Cayston’s box. The script expired and literally lost into oblivion. No record.
Each year, sometimes mid-year, insurance contracts change, distributors, etc, and the chess game starts all over. Some stays the same and some doesn’t.
I have about 12 prescriptions, give or take. I have 5 pharmacies, and of those twelve, I can only put three of them on auto-fill. I can’t put the others on auto. I have to speak to many of the pharmacies each month.
This is true for many folks.
Some pharmacies text me, some don’t. Some call or email, some don’t.
In my phone I have the pharmacies listed and the drug names listed after the numbers. Dates to fill and expiration dates to follow, and a word doc to follow. Every month when I do my monthly drugs – I take an inventory.
You have to persist.
I applaud you if you are still reading.
Pause
For years I have disliked the words CF Fighter.
It sounds as if I am fighting against CF.
I am not fighting against CF.
I would be fighting against myself.
There are CFers who do fight against themselves – hate CF to the core; lots of depression and anger, and resistance to taking care of themselves.
In my teens and twenties there were many CFers that experienced much depression and anger, unbelievably prevalent. The clinics did a lot of mental screenings.
I realized early on not doing my treatments would kill me very fast. I never went that route.
I can’t hate CF. It’s a mutation.
It’s not my body’s fault. It isn’t the mutations fault. It’s a mutation.
It is not a great mutation. It’s very real. But, I can’t hate it.
It is easy to get mangled. Then you have to undo, unwrap, let go and deflate that compulsory anger.
I am fighting for my life.
You are fighting for your life.
How far and to what extent will you fight for your life? That’s a big one right.
I am fighting for the love of myself.
You are fighting for the love of yourself.
Stop and speak-up for that love; for that love for yourself.
I am always unbelievably grateful whenever I get my drugs. The pharmacy delivered.
Much love to you and you and you in this new year.
Playing with words –
Worries
Worries, lay idle under the
mound of leaves, sticks
tossed and thrusted.
—————————————-
A burning – still
smoke circles last
night’s fire, morning’s
embers
——————————————
Upstream, flowing water
follows earth’s gravity.
——————————————
A cool pool soaks
the splintered sticks into
hushed and blackened mush.
——————————————
Awake, stand up, stretch
your arms high. Pour
a cup of coffee.
——————————————
Arms move down, rest
on your hips, graciously
signaling – Worries, you don’t
have a chance, bitch.