Exhale.

I wake up and within five minutes Accredo pharmacy is calling.

I look at my phone and they have already called me once.

They have called me once each day over the last three days.

You say, “Obviously, you need to call them.”

Yes, I know they want to refill a med, and I need to refill this med. But somehow through the channels of time, the passing of the baton from one department to the next, they have bumped up their monthly calls a week. If I call now, or a few days ago, it would be before the 30 day mark. It has to be 31 days and over to refill my next monthly medication. So, I wait a few extra days to meet in the middle.

How do I know this? I have been doing this longer than I would like to say. I don’t know everything – clearly. But, I have learned many lessons along the way.

I can’t believe the system in its present existence hasn’t changed much – if not gotten worse than it did 25 plus years ago. Even when my dad had a good paying union job, with supposedly good paying union medical benefits.

Let’s proceed shall we –

I call. Great. Trikafta, Vertex pharmaceuticals and all its great science, technology, and wealth has done well. They have departments that coordinate the prior authorizations and copay assitance programs well in advance that I don’t even have to breathe the words “prior auth.”  Their patient assistance orchestration is massive. And their shiny building in the Seaport district says it all.

Trikafta is all set to ship. At any one time, I have drugs flying through the air soon to land on my doorstep. Thank goodness I live in an area that is safe to land. I used to live in an apartment where my newspaper got ripped off every weekend.

“Why would you like to cancel, ma’am?”

“Someone keeps stealing my paper before I get to it.”

“Oh. We can cancel that for you, ma’am.”

What would happen with my golden box of miracle meds? Thankful for my house and neighborhood, and the woods out my door.

Pressing on –

“Ma’am – do you have a copay assistance card with Cayston?”

“Yes, I have talked to someone about this months ago. I spoke to Cayston and to you, Accredo – I have copay assistance.”

“Well, it doesn’t show that you do. Unfortunately, you have a balance of $700.”

I repeat what I just said. I honestly feel I am speaking into a vacuum. I call Cayston, they say I have copay assistance card, in fact since 2017, and I don’t need a new one each year; as long as it is on-file. They said they would reach out to my pharmacy and get that on file.

Accredo asks me if I have a copay assistance card. “Yes.” I repeat. The hamster wheels spins.

“Well ma’am, your account doesn’t show that you do. I would consider calling Cayston right away to get the assistance on file, they only back pay so far.”

I get off the phone. I inhale, and exhale.

Why is it every month I talk with Accredo and I say I have copay assistance, and it doesn’t show that I do on-file – why isn’t someone reaching out to Cayston, or to me? To give me the vital information to prevent a growing outstanding bill?

I decided, I am not going to pay. They need to figure this out and fix it.

If I was Oprah – and you laugh to yourself, “You are not Oprah.” That is correct.

But if I was Oprah, when they say, “Nothing can be done.” Something can always be done. It’s a choice, and it depends who you speak to, and which bridges they choose to build.

I never accept, “Nothing can be done.” You know how many times I have heard this in my life?

Press on –

Cayston: three copays since April, $230 each. I did my part.

I connect to Cayston; Cayston connects with Accredo. Three-person phone call.

They can only go back 90 days, which is May. They can cover two copays, what about the third?

For clarity – I get this medication every other month. It is an antibiotic.

Cayston connects with the internal override department. Four-person phone call.

Copay assistance connected, back-pay fulfilled!

But ah – a little known fact at the end. Almost said so quietly like they didn’t want to broadcast this important information. The copay assistance program caps off at $8,000.

No one has ever told me that. No one has told me how much of the copay assistance I have used.

What happens after that? Does another copay assistance get issued?

To note, I am hoping to get off the medication. I am not sure if it is possible. If I increase exercise, I may be able to pull it off. That probably doesn’t make sense.

The goal forever and more is to keep in top condition. Airway clearance and exercise. If I don’t have junk in my lungs to treat, you don’t have to worry about the antibiotic to treat it.

It also depends that you need more healthy cells than unhealthy. There is only so much lifting healthy cells can do.

Is it possible? I am willing to forge that possibility.

Reflection – Why do we have copay assistance programs?

The cost is too high. 

Why do I need to be on a four-person copay assistances cars phone call?

It is a scam. A monopoly.

Everything falls on the patient.

This is why WE NEED MEDICARE FOR ALL

This doesn’t end. This doesn’t stop. Costs will only go up. We all know this –

I will be a Luddite to the end of time. It is not a perfect analogy, but I like Ned. See link below.

Much love to you and you and you.

Press on.

Keep moving forward.

Do not ever give up.

https://www.historic-uk.com/HistoryUK/HistoryofBritain/The-Luddites/