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CLL Support Association
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Anxious

I am 70 ys old and have Medicare A&B, an AARP Medicare Supplement and a Humana Part D prescription plan.I was just told I am supposed to start taking Ibrutinib treatment for my CLL. When MD Anderson checked , my co-pay will be $2,763 A MONTH! I'm on a fixed income and have no idea how I can afford this. Has anyone experienced this before and if so, are there any suggestions?

Thanks,

Pete

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Pete, you should check other prescription plans now that you can change during your plan during open enrollment. Find an insurance agent who specializes in Medicare and they can run the numbers and find the best plan. You will find that the co-pay likely drops to about 500 in the second month but you are still looking at 10,000 per year. Talk with LLS and they can suggest organizations that provide financial help.

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Pete,

Another option is to look for a clinical trial. You may be able to get venetoclax for free, for example. Go to clinicaltrials.gov and search under CLL.

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Pete, I certainly understand your being anxious. I, too, am anxious about how to pay for treatment.

I have not been treated yet, but was told last spring I should go on Ibrutinib. When I told the Dr. I could not afford Ibrutinib, she evidently inquired of my Part D insurance about payment--I got a letter from the Part D insurer stating it would be covered---(CAUTION)--I don't know how much I would have had to pay as my co-pay, however.

Part D coverage is not what it is cracked up to be.

The following information might help you to find some assistance with payment:

cancer.org/treatment/findin...

Also, if you will speak to your Hemo/Onco about the situation, there may be some assistance through any special pharmacy available to cancer patients in your area.

Here's hoping you are feeling well enough (and maybe have some help) to get the information you need. It is a very uneasy feeling to face the fact of not having full coverage at this time of life. (If you were to have chemo (IV) you part B Medicare and Supplement would cover it in full. But they have changed the game on us and don't have to cover pills. I don't think that will even be considered in the current, let alone future, budgets being considered.

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I am 61 and on watch and wait but my my wife has RA and while we have very good insurance all the drug companies have been quite good about keeping the out of pocket cost very low

They generally are well setup to assist you by phone and some forms

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Pete, I would check with the drug company that manufacturers the drug. They have programs that help with the cost. Also ask to speak with a social worker at MD Anderson that can help guide you. Good luck.

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I was approved by the PAN Foundation over the phone in January. Pan picks up what my insurance doesn’t cover. Check them out. Kind regards, Sally

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Hi Pete,

When you asked this question 6 days ago you received a number of helpful replies. healthunlocked.com/cllsuppo...

And as lawyermordy says, it sounds like you need to immediately change your Part D drug plan, since the $2,763 A MONTH copay for Ibrutinib is excessive.

Since each zip code and company formulary has different pricing the best and most reliable way to choose is to use the Medicare Plan Finder here:

medicare.gov/find-a-plan/qu...

Then enter your Medicare number & zip code on the first page then on the next page choose all the drugs you expect to use in 2018. The monthly premium is insignificant compared the effect of the formulary and copays.

For many drugs it might be 90 tablets for 90 days by mail.

But for Imbruvica enter 90 tablets for 30 days, and choose retail pharmacy, not mail order.

The final results will show which plan has the lowest annual cost for your specific case and list them increasing cost order. They also show the rating stars for each company, so you can see how much extra it costs to get a higher rated company and plan.

You should do this each year, since the formularies and premiums change every year and you can change plans between Oct 15 and Dec 7 every year- without having to answer any questions about cancer - this only applies to Part D plans. NOT the Medigap or Supplement plans.

If the above is too complex, you can get help and advice from your state SHIP plan- see this link to find the correct info for your state:

medicare.gov/Contacts/

Len

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Len, thank you for your reply. I will try the link you provided and post the results.

Pete

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I was approved by the PAN Foundation.

panfoundation.org or .com

866-316-7263

They pick up what my Medicare Part D doesn't

Good Luck and keep us posted as to what you find out.

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Pan thank you.

Pete

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It's great that an org like that exists.

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I too am on Ibrutiniv for CLL and am 76. I live In CO and have Kaiser Ins. $4000 yearly deductible and $10 monthly copay. Love it. Kaiser is available In a few other states

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Thank you! I live in central TX and don't think Kaiser is available here( I checked but if someone else knows different, please let me know).

By the way, how are you doing on the Ibrutiniv?

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To all of you that have replied, I thank you very much ! As soon as Monday comes, I plan on following up on your suggestions. I will keep you posted.

Pete

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I agree you need to look into other medigap or advantage plans that will cover IB. In addition, find out if your MD can apply for a grant from the manufacturer to reduce the cost. You really do need more information. Best wishes, Carole in the U.S.

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This forum addressed this very problem w/in the last 2-3 weeks. Check the archives.

Basically, follow len lankisterguy's advice - either you miscalculated, or you definitely have the wrong Part D plan - $2700+/mo is WAAAY too much. I (and others on Imbruvica) got mine down to around $10K/yr, and found a charity willing to pick up the rest. Archives has a list of such charities - LLS & PAN are two of the most popular. CAUTION - these charities ONLY make new grants late in the year. LLS is renewing grants now, and PAN hasn't done anything toward their 2018 grants yet; check their website at least 1/wk, especially in December.

Good luck!

Gary

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Do the grants cover already-paid-out expenses or expected expenses for next year?

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I'm reading the letter I received from PAN. The first year of eligibility with PAN expenses can be submitted for reimbursement that were incurred within 90 days prior to your eligibility begin date.

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Sounds like it's best to apply asap after treatment starts and they cover expenses going forward plus 90 days ahead of their grant approval.

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The grants are based on your yearly income so if your income is to high you won't get a grant. Also grants are only for one year at a time. You have to reapply every year to see if you are eligible or if there are funds available.

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Shouldn't that take you through the donut hole and into catastrophic? Thereby reducing your payment greatly?

Have you spoken to the specialty pharmacy that will be overnighting your meds?

When we spoke to them, there were grants and such that would help pay for ours ...depending on your income level.

It took us a couple of weeks to get our worked out and meds sent to us.

Our part D is Aetna

Blessings to you,

Farrpottery

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Farrpottry, thank you! I just found out today how the donut hole/catastrophic situation works . MD Anderson has applied for a foundational grant so I'm hopping that turns out positively. I will update everyone who has responded , as soon as I hear back .

Pete

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Pwebster,

Awesome!!! You're going to do great! This pill is a blessing for my hubby and I pray it will also improve your health too.

Farrpottery

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How did you finance your Imbrutinib......we have also had this nightmare.....we too have Humana Part D.....and were shocked at the expense.....have you explored any other plans? We got a grant from PAN....but am worried about next year as we still will have to pay at least $11,000 a year....we are retired as well

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I don't know what your income situation is but it was suggested that I go directly to Johnson and Johnson's patient assistance group to see what they will do. To my amazement, after verifying my information, they have agreed to pick ALL of my monthly cost ( after I spent an initial $2900) for the remainder of the year. They will agree to continue this indefinitely as long as my income doesn't increase significantly ( it won't as I am retired and things are fixed).

If that doesn't work, you can always try the Leukemia and Lymphoma Association as they may have something for you.

Hope this helped.

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