Remember my pharmacy debacle not that long ago?
Which one?
Good question –
The one a little over month ago when I almost had a breakdown. I had to gather my wits and assemble my thoughts.
After I wrote that blog, people gave me ideas.
One, I reached out to my social worker and basically said Help. I can deal with a lot. I mean a lot. I can do the treatments, the schedule. Recently my power went out, and I set up my neb in the car. You have to have a power component for the lighter, in which the neb machine can be plugged into the power component. I did that, and it worked.
I can build up my stamina, my endurance, a strong mental framework. I can do 150 minutes/week of exercise. I can do the appointments.
This shit – driving me over.
I plan to reach out to the dedicated CF pharmacist in MN as well.
Friends also gave some strategies. I did not think of before, or I should say, I didn’t think one was available for me. My friend, Deb, suggested maybe I get a patient care advocate.
This is how it went –
Without a pause the next day I wrote a letter with full explanation of the situation and significant delays in receiving my medication, and then saying, “I request that the two old incorrect accounts BECOME INACTIVE for absolute, and please send a letter to me in confirmation of the resolution.”
I wrote it and post marked that day. I sent it certified. They received it, but no such response as of yet. But, I have it in writing.
Two:
I called my dear, dear pharmacy benefit manager (PBM – for future) requesting a patient care advocate. The PBM said they usually do not have a dedicated patient care advocate to work with just one patient (seemingly there are people to help patients, more like a group effort, a pool of people. How big is the pool? Is there a true pool?)
My friend, Deb, works for MN division and she said, “With all the people they have working for the company, someone has to be available to help you.” Her mom also had been diagnosed with cancer in recent years and they assigned a patient care advocate for her.
The woman said, In your case . . . I can see what we can do.
In my case.
She told me that she would forward my concerns along to a patient advocate and someone will be calling me back the next day.
The next day after 5pm a woman named “Jamie” called me back. She said they don’t typically assigned a dedicated patient advocate, but in my case . . . .
She continues, “The first issue is that we are dealing with a special pharmacy.
Second, “We don’t call the specialty pharmacy – they just run it in the system and if it has been approved, it will go through. I don’t know why they were telling you that.”
I explained the 3 of me in the system and I said, “I have a feeling when someone picks me up, the notes are not consistent. Depending on who and when – and if you pick the wrong me up, it isn’t tied to an insurance. Perhaps if I was on that end, it is no wonder I had been put on hold numerous times.”
She agreed.
She also said, the provider has two options for prior auth (PA).
Urgent: 24 hours, or
Standard: 7-14 days.
Good to know, hey?
Remember they can give verbal PAs.
The general pharmacy line says a response in 72 hours – so I would consider that inaccurate and misleading.
I, then, called Vertex pharmacy. I have a dedicated account person, have had for years.
My notes:
“Every Monday Vertex sends out a list 3-4 weeks in advance to the providers which patients will need a new PA.”
My account person – who is unbelievably kind and listens and wants to help. Everyone who I have spoken to at Vertex has been gracious.
My new PA request was sent out the first week in November. Right on schedule. I believe the ball was dropped at my clinic. As my account person said, “I hope it is just a one-off.”
Me too.
She said 5-months from now, she would email or text me when she sends my providers that I need a new PA. Super kind of her.
Let’s do the quick math:
I do not know the number of CF patients under Children’s care. I know that in MN there are 600 plus.
About 90% of CFers have the mutation for these expensive drugs. We will bump it down even lower – let’s say 85%. That is 510 patients/52 weeks in a year = Approx. 9-10 patients a week that need prior auth’s just for one medication. There are others meds as well.
Truly in a four-week period, there are 20 working days. By given the math, they send it over Standard (7-14 days) for approval. That means, once it is approved, that has to be communicated with the specialty pharmacy.
Then often – you, the patient, have to call the specialty pharmacy, hoping serendipity is on your side.
Note: They don’t call you to say they have received the PA.
They will alert you (most often) when the PA is set in motion, time for a refill, as everyone is getting paid. But, not when a new PA is needed, nor when you need a new script. That is up to you –
Silence, here, is not your friend.
Back to the time line:
Time you connect, let’s say 2.5 weeks in (this does not include time for rejections and resubmissions).
Set a ship date. Sometimes, in my case, they often overnight it because everything has taken so long.
Average 2-3 days to reach your house, or a Thursday order placed, received Tuesday. Many of these companies don’t ship over the weekend.
You are receiving it in that 3rd week. They only supply you with four weeks at a time. Not every month, but every four weeks.
And the pharmacy stands by a very strict timeline. All about money.
This is so much pressure to put on the providers, most often the nurse practitioners (NPs). Depending how many patients are seen in the clinic warrants the need for NPs. They never stop working.
At Children’s there is a receiving PA fax and then it goes from there. The fax that Vertex sends out every week. Tick, tick, tick.
Far as the ball drop: people have been sick; they have been out, tired, exhausted – yet the work still goes on, right. It’s almost unbelievable anyone can get anything.
It’s the man and woman power; the dedicated, with the best intentions to get meds out to the patients. They are seriously working their butts off all the time.
Swoop back to “Jamie.”
After I hung up with her, very kind and gracious to chat with me and she said I could call her anytime.
What is your number for the future? Stated number.
And name? Jamie.
I hung up and see “Pharmacy benefit manger,” the general number that I have in my phone already. That wasn’t a patient care advocate number. They said I was going to speak to a patient care advocate.
Yes, the number reaches someone who took the time to help. Maybe they are in the same department?
I called today about a pharmacy issue – shocking I know.
Hi, this is Jamie.
This wasn’t the Jamie I spoke to a month ago. This Jamie seems confident that she is Jamie. She said it readily.
How many “Jamie’s” work there?
“What position are you hired for? Jamie #1, Jamie #2, Jamie #3, onward.
Or the fact the first Jamie didn’t want to identify herself, and I am sure didn’t want to talk to me, but someone said they would call me! So, she was tagged, it.
Now, the other Jamie is stuck with me, or more accurately until the next Jamie.
Much love to you and to you and to you.
Keep your head up. Never give up. Ask for help. People want to help. As I have learned, and learn, and learn.
I raise my hand and say, I need help.
Their response – Sure. How can I help?