Copay accumulator :(

[OKgal]

So I got caught up in copay accumulator this year. I knew it was most likely to happen at some point, but surmised there would be something in writing - either sent to me, or in the insurance documentation, or on the insurer's website. There was nothing. Uneasily, I went with my gut and started the process of first refill of the year, which went into a glitch. The copay program from Shared Solutions was strict - they would only pay 5k, which left me with $800. I called them several times and they said there was nothing else to help me and confirmed the program had changed. I called the pharmacy, where they said they had nothing to help except contacting Shared Solutions. I'm in a vicious cycle at this point, but still unsure whether my insurer has adopted copay accumulator or not. I called my insurer and they said copay will not count towards my deductible and it's not in writing anywhere! So how are we supposed to know???? How can we, as patients, prepare????

After a few weeks, pharmacy calls back and asks if I would be willing to consider generic. I stated sure and would call Mylan immediately for help. They said it wasn't necessary and could apply assistance on their end for them. I, uneasily, agreed and set up my first of the year with Mylan's generic Copaxone. Claim goes through to my insurer and it was not applied to my deductible. I stew on this for a few days, feeling as if I've made a grave error in my supposed proactive decision making. I, finally, call Mylan.

A few points to be made here with my phone call to Mylan. I WAS NOT IN THEIR SYSTEM! So I'm now receiving copay assistance with them and the pharmacy did not even have to alert them of a new patient. What kind of **** is this? I asked about the copay assistance and state I will burn through it quickly without it helping me, but for a few months. I was told they have a new reimbursement program. Mind blown and yet not surprised. My stomach sunk at that point, knowing I made a costly error. I've already burned through $4,781.69 of Mylan's copay assistance of their 9k per annum awarded. I can't get this reversed through the pharmacy. Hubs and I tried. So I'll be out around $4k in another month to fill my drug, because I still have to meet my $8,150 deductible with insurance.

If you read through this and are commercially insured in the USA, learn from my mistakes and be a little more proactive than me. Thanks for reading.

[twooldcrows]

wow don't understand all of this bs....

[rjoneslaw]

wow

[TexasLawman]

I’m sorry. 😢

[DM0329]

Don't know if you're on Medicare like me (due to SSDI---medical retirement) but the Part D benefits (or lack there of) can bankrupt you in a moment. My Avonex is currently costing more than $7,000/month. Now, is that reasonable? Yes; it's "worth it" but really?

Sorry to get "mildly political", but the United States must remove "capitalism/free market" systems from it's national medical system. If you have means, you can stay on private insurance, but if not, who can pay 20% of those drugs?

[Hidden in reply to DM0329]

Yeah, what about the donut hole closing? It's not. It's getting bigger and even after coming out of it, I will still have to pay over $300 a month. No generic available under my Part D. Will probably quit.

[DM0329 in reply to Hidden]

You can't quit! Hopefully Big Pharma will help? I love that they help with the MRI Access Fund. Only wish I knew about that earlier as my deductibles are $300!

[OKgal in reply to DM0329]

I am on private commercial insurance. My plan's deductible and out of pocket costs are the same, so I have to meet $8,150 before anything is paid out. This is where copay assistance helped until CMS decided health plans didn't have to allow the assistance to go towards deductible. I don't mind paying a reasonable copay, but paying thousands of dollars does not compute into my monthly living expenses already in place. One may be able to talk the pharmacy to pay a portion of the med cost and have a rolling bill with them. One has to ask, and even then the CSR may be unaware of this. The portion is still a few grand to cough up before they'll agree to ship your DMT. Did I forget to mention I'm paying $650 a month for health insurance premium for myself?

One question no one can answer is - why does a 24 year old formulation of a drug still cost thousands of dollars? Why, when they say go generic and be a good steward to your health care plan, still cost thousands of dollars? The system is messed up, for sure.

So no, being on private insurance hasn't saved me from this debacle. Thinking just Medicare is messed up is erroneous. It's ALL messed up.

[DM0329 in reply to OKgal]

I totally understand your frustrations. BTW, I didn't know about the 24-month waiting period until you transition to Medicare (after your SSDI is approved).

I "lost" my job (a career that I loved for 10+ years) in 2008 (when the market crashed). It was tough finding a job with a master's degree (my MA is not in engineering/ science/business) with multiple sclerosis (for 20+ years) and being over age 40.

I felt the deck was stacked against me. I worked for more than a year at an entry level job that I struggled at (hid my MA and did entry level work just for the benefits). A girl does what she has to do, right?

I am truly "blessed" in that I "used" my father's life insurance (when he passed in 2010) and small cash assets (split with my "sometimes nice" brother) to pay for the 24-month COBRA extension that is permitted (if you are declared legally disabled while on COBRA). My heart still breaks when I think of the monies paid out!

Hang In There!

[TexasLawman]

Most pharma have patient assistance programs. Find out from your doctor.

[OKgal in reply to TexasLawman]

I have copay assistance. I wrote about having copay assistance. Copay assistance is no longer enough. Yes, they will accept copay assistance and send me my meds and they have. The copay assistance does not count towards my $8,150 deductible. So let's walk through this:

First fill - $4,781.69 is charged. Mylan copay assistance covers this. $0 applied to my $8151 deductible.

Second fill - $4,781.69 is charged. Mylan copay assistance covers 4,218.31. I pay $563.38. $563.38 is applied to my deductible.

Third fill - $4,781.69 is charged. Mylan copay assistance covers $0. I pay $4,781.69. What I pay here is all applied to my deductible.

Fourth fill _ $4781.69 is charged. Mylan copay assistance covers $0. I pay $2,804.93. What I pay here is all applied to my deductible. The entire $8,150 deductible/out of pocket max has now been met.

Ugh! How am I going to get this type of disposable income to pay for my med? I've helped myself out a bit with talking to Mylan and going on their reimbursement program. So I've got my costs down to 3,931.69. Note: They would have picked up the full deductible had I thought for a second to call them before filling my first prescription.

This still makes my head spin and not in a good way.

[johnMSAA Partner]

Sorry you had to go through this, OKgal . For you and anyone else interested in the sometimes confusing info around copy accumulators and insurance, MSAA has some resources you can review:

Ask the Experts session transcript:

healthunlocked.com/mymsaa/p...

"What Happened to My Copay Assistance?" brochure or downloadable PDF:

mymsaa.org/publications/wha...

"What Happened to My Copay Assistance?" recorded webinar video:

mymsaa.org/videos/copay-acc...

"What Happened to My Copay Assistance?" recorded webinar PDF transcript:

mymsaa.org/PDFs/webinar2019...

- John, MSAA

[OKgal in reply to johnMSAA]

Thank you John. The information is invaluable. I had watched it when it was first live last year, and then watched again after my chaos this past week to see where I may have missed something obvious. I'm still deciding where I go from here. I know my options and will have to make a decision within a month in order to remain on a DMT. I'm stable and prefer to remain this way.

I can glean something good out of this terrible situation. My uninvolved retired accountant spouse got involved. After he got off the phone with pharmacy, he looked at me and said "now I see what you've been dealing with all these years. I need to help you. We need to be a team on this." And then, he apologized.

[jorrell]

The medication system is so corrupt. It is now February and I have paid two mortgage payments and four identical medication payments... still haven't met deductible. No disease modifying drugs involved. I have stopped taking neurological /nerve pain meds, and others that aren't needed for me to function. In March I'll get my Ocrevus and that should cover $6K deductible and $8K max out of pocket. After that, perhaps, I'll be able to make it through the day without pain.

And they wonder why there are so many drug addicts and alcoholics out their, it is called self medicating.

[OKgal]

UPDATE!

After many, many phone calls (by many complaining members), the insurance company is allowing copay assistance to count towards deductible. There was no notification given to the members of this invisible new policy and they stated this is not there stance anyway. All is well and I placed my prescription order with a different specialty pharmacy yesterday. We have two to choose from and I opted to switch mine after the lackluster response from the first one.

Thank you all for your responses. This has been a long and trying five weeks. Happy to be on the other side of this now.