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CLL Support Association
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Going on Medicare part D

My husband is retiring and our prescription health insurance will be Medicare part D. He is on Imbruvica. Just found out we will pay $6000 a month, for 2 months, then $1218 a month thereafter, until we start all over again. I’ve contacted Patient Access Network Fnd and LLS. Can anyone provide some other organizations who might be able to help out? He needs Imbruvica.

11 Replies

Speak to the specialty pharmacy regarding grants that are available, they can help you.

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Thank you. I also found an old post from 2 years ago that listed several nonprofits. I have a call into our current specialty pharmacy but can I keep the same pharmacy?


There are only four specialty pharmacies, which one is chosen by the hospital where your doctor works.

You and your prescription insurance won't have a vote.



Do you have the option of a part D supplement? I don't know what the price range for them is, as mine is part of my retirement package. I have Silvascript and would have to deal with the "donut hole" but I believe that the LLS grant usually covers that for people with a supplement. I am not dealing with Imbruvica, so don't know the coverage for it. My brother researched independently and ended up with the same supplement, but I don't know how much cost and coverage is affected by location.

lankisterguy has posted about counselors who help determine which supplements are best given an individual's specific situation. He may be able to provide specifics.


To avoid confusion - supplement policys cover the copays on Medicare Part B- hospital charges, tests, drugs infused etc.

Part D insurance - prescription drug plans are separate insurance for drugs taken at home. These are separate from supplement plans.


Anyone US resident that is having problems sorting out various Medicare options should seek help and advice from their state SHIP



State Health Insurance Assistance Programs (SHIP) provides free help to Medicare beneficiaries with information, counseling, and enrollment assistance.



Are you sure that the continuing payments are $1218 a month? The “catastrophic “ coverage stage in Part D is when you reach $5000 - or something like that. So, the first payment might be $6K, but the second is a complex calculation. At that point, it is a very small percentage of the cost - in catastrophic phase.

Then again ALL Part D plans are different.


As a first time applicant your husband can apply for Medicare coverage 3 months before his birthday and coverage will start on the first day of his birth month (before his birthday). During the 3 months, you can use the online tool listed below. Medicare Part D drug plans vary widely according to zip code and formulary (how much copay is involved at each increment).

The Medicare Website has a tool that takes away all the confusion and allows you to see the annual cost for different plans.


Once you get to the website - fill in all your personal details on the first page and then go to the page where you enter your existing prescriptions, then add Ibrutinib/Imbruvica and choose 90 capsules for 30 days.

When they ask about mail order vs. local pharmacy - you should choose local- it seems counter intuitive since the specialty pharmacies that send Ibrutinib always use FedEx, but the website considers that a local pharmacy.

After all that entry- you will get a list of pharmacy names and plan names. The lowest total annual cost will be listed first and then in increasing annual cost. Some pharmacies will be listed multiple times with their different plan names. In my case the Express Scripts Medco with the lowest monthly cost is not the best deal, since the copay is higher, making it about $300 more per year total annual cost.

It's complex and the only way to figure it out is to use the online tool.



Make sure that your husband applies for Medicare BEFORE the month of his birthday! I was incorrectly told during the month of my birthday by a Social Security employee. It meant that I did not have full coverage for the first month.


Wow I was quoted $2500 month1 and 1230 thereafter. I didint know i had a bargain. I am on Silverslippers pdp.

Unfortunately Medicare pays for iv and other in hspital medication. With a medigap plan it may cost nothing.

However Part d prices like all other drugs. Specialty co-pays must be charged to the patient and Medigap does not cover this.

There are grants amd a drug company special programs.

Contact the Manufacture your dr and his insurance handler. By the way eachart D insurer prices all drugs differently. Use the medicare dot Gov site. To compare. Itmt easy but worth to effort.

Good luck and a CR wishing your way

A 25Year INHL MZL survivor


Try Johnson & Johnson patient access fund, jjpaf.org or 1-800-652-6227



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