How to manage the copays for Ibrutinib with me... - CLL Support

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How to manage the copays for Ibrutinib with medicare.

brerrabbit profile image

Two years ago, my husband was diagnosed with CLL and now treatment is being recommended. His insurance is Medicare. The treatment that is recommended is imbuvica or Ibrutinib but after medicare coverage we would need to pay $2900 for the first cycle each year and then $609 a month in copays. How have other people managed this expense? Thanks so much for any ideas.

22 Replies

Talk to the specialty pharmacy about applying for a grant. They have all that information, the amount you get depends on your financial need. I took it for 4 years, I’m also on Medicare and never paid a dime. Also, does your husband have a Medicare supplement insurance policy? It’s worth looking into that too.

thanks so much. I'll look into that.

Have you tried lls or the cancer society for grants ?

brerrabbit profile image
brerrabbit in reply to Ironj

thank you so much for your reply. I'll look into that.

That's about the best co-pay I've heard with Part D, I'm afraid. It's not very easy for many people. I know that the CLL Society has a fund tor co-pay assistance, though I don't know if it's depleted yet this year or not.

Unfortunately it's all based on "financial need" which in theory is fair, but lots of people get lost in the cracks. Financial need is all relative to where you live, etc. Everyone calculates financial need differently. MartiP is right also - it's worth looking into your Medi-gap plan if they provide assistance. Medicare is so complex you never know. I know people who've gotten help for these types of things from places like the VA, certain pension funds, etc. The whole concept of outpatient pharmaceuticals that run into the $150K- $250K range per year is new. I think Ibrutinib retails at $14K per month. Well, good luck. I think you will find someplace to help. It just may take a lot of calling around.

brerrabbit profile image
brerrabbit in reply to Jonquiljo

Yes, I'll look into the medi gap plans. Appreciate your reply. Thanks.

My co-pay is slightly higher than yours but not by much. My specialty pharmacy indicated that they had needs-based grants available to assist with the co-pays but only for income levels below $83K (starting point for entry into the grant money). That $83K would be based on your tax return and, therefore, includes retirement draw down and social security.

brerrabbit profile image
brerrabbit in reply to hhk50

Yes, I will try the specialty pharmacies. Thanks so much for your reply.

Contact PAN Foundation : panfoundation.org/index.php... You can apply for help when on Medicare. They look at your annual income.

The way you will receive your Imbruvica is through one of the 4 specialty pharmacies: Onco360, Diplomat, Avella, or Biologics. Once you are linked to one of them, ask to speak to their person in charge of patient advocacy and funding. They have all the resources and paperwork necessary for applying for grants to help with co-pays, and will make applications easy for you. I wish you well as you find your way through this journey.

brerrabbit profile image
brerrabbit in reply to starsafta

thank you so much. Really helpful.

Johnson and Johnson ask about Ibrutinib grant.

thank you, thank you

A foundation picks up mine. Have your MD or hospital submit paperwork via specialty pharmacy.

brerrabbit profile image
brerrabbit in reply to cll2013

I'll do that. Appreciate your support.

The PAN Foundation in Bethesda MD covered my Ibrutinib this year (I had to stop it after 3 months due to side effects). I filled out a form listing my annual income and my doctor or the pharmacy, OptumRx, submitted it. He said it was unusual for the copay to not be covered by them. FYI I'm in Nevada.

brerrabbit profile image
brerrabbit in reply to bhayes84

thanks so much.

lls.org also has grants and can advise you about other options.

thank you so much.

you require a prescription drug program. also, i hope you have a co-pay (secondary) insurance for the 20%. very important to have a really good RX coverage - if you can still get it now that you have the disease. my RX program covered $50,000. last year.

Pin57 profile image
Pin57 in reply to mhrh

Mhrh - Newbie to the site and since I was stunned by retail cost of CLL pills ($25k/month!) decided to start research of what best insurance types to get before treatment is needed so Im not in panic rush.

Recently diagnosed with CLL, on W&W at age 63. Q13 mutated n doc thinks it may be years or decades till treatment, that’s good lucky news for me. But who knows for sure right?

So thinking get Medicare Parts B& D (to go with Part A) next year (2022) when I turn 65 in October. Will also keep my current (but will be secondary) Atena insurance which in itself has good med n a good drug coverage.

Gonna see what Atena covers now on these very expensive CLL treatment pills (should I suddenly need treatment) and also what co-pays etc they’d pick up once I’m in Medicare primary insurance mode at 65.

I’m sure it’ll kill a few days of insurance research to see about where coverage would be for a typical CLL drug treatment .

Dual insurance .... gotta be the way to go as you noted? Keep costs down.

I know I won’t fit into a grant status but that’s ok it’s designed for those financially in need, way it should be.

Too bad US insurance is complex to navigate coverage?... nothing’s easy about just finding out what I’ll end up paying out of pocket if and when treatment time comes.

But here I go, wish me luck .

Interesting old post ... gonna try to find others on this insurance topic. Great website this ! Just found it a week ago.

My specialty pharmacy researched and secured my grant to cover co-pay.

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