Ibrutinib and Medicare

[Bicycletta]

In researching part D options it seems like the out of pocket cost per year will be about $10,00 for all of the companies in addition to the monthly cost of the plan chosen. Is this what others are finding out?

[Hidden]

you skipped a o. you mean 10,000 and that is correct. However there are 2 helpers for co-pays i know of . the pan foundation and Leukemia and lymphoma society. They do say you have to meet income requirements.

PS. if you search this has been covered many times before-including just in a post started yesterday

[AussieNeil Partner Administrator in reply to Hidden]

Which is this post: healthunlocked.com/cllsuppo...

[Bicycletta in reply to Hidden]

Thank you. Yes I should have said $10K. I am still working and covered by my employer policy; starting to look at my options for retiring and starting Medicare coverage. Guess I will be working a few more years.

[virdieblue in reply to Bicycletta]

My advice to everyone is keep working if you have good health coverage!

[Shepherd777]

Some have no income requirements and at least one has a $70,000 and below requirement.

[mk2045 in reply to Shepherd777]

What foundations or organizations don’t have income requirements?

[Shepherd777 in reply to mk2045]

I wish I could remember that for you, but my wife and I are retired and fell within the PAN income margins and did not look any further at the time. There are also still clinical trials being done with Imbruvica and venetoclax that are free if you check with the NIH, MDAnderson, etc.

[mk2045 in reply to Shepherd777]

OK, thanks. I think there are income guidelines on all of them. I'd be surprised if there weren't. We won't fall within the guidelines.

[livinglifewell]

I get a grant from "Patient Action Network" for help with my co-pay. They've sent a letter telling me to share the word, they have the funds to help more people. They recently extended coverage for travel expenses as well.

[Hidden in reply to livinglifewell]

I wish. I have b-pll which is a sub cll. Pan will not accept it as a diagnosis

[livinglifewell in reply to Hidden]

Even when you explain it is leukemia?

[Hidden in reply to livinglifewell]

my advocate from my health provider called and argued for it. they would not accept it even though the diagnosis code is in range. The leukemia and lymphoma society do have b-pll as an acceptable diagnosis. However at the time their plans were not acceptin any new cll members. I am now getting Imbruvica totally free from Johnson and Johnson directly.

[lexie in reply to Hidden]

Leukemia and Lymphoma Society just got funded for CLL again to $8000 on Friday so it's there now for CLL, for anyone who tried before and were told the fund was closed. They help with insurance premiums too, not just co-pays. You have to keep checking their website for funding updates.

[tsvieps]

My Ibrutinib costs are about $1k/mo after going through the donut hole the first month. That month was about $4k if I remember. But I take only 140 mg per day, which is 1/3 the normally prescribed dose. That works for some. I also take Chinese Herbal meds that has no insurance and some off-label drugs.

My income is a bit too high for help from the drug company and other sources mentioned here. With hearing aids for my wife, glasses, Medicare and Medigap and Medicare D, we are often over $25k/yr out-of-pocket. That is about the same as our mortgage plus property taxes.

We do not have much left over, but we do make just enough to not get any subsidies on co-pays. That said, I cost our Medicare D insurance company plenty.

For all the politic noise about greedy insurance companies, I am pleased with ours. Some on this site in places like Great Britain are not able to receive Ibrutinib because their "free" medical system will not pay for it. They get FCR or BR instead because it appears less costly.

[Pooldude05 in reply to tsvieps]

I agree with you we still don’t do that bad in the good ol USA you can only go so far on FCR OR BR before it is worthless and does more damage than good , stay healthy brother and maybe they will find a cure in the not so distant future and we don’t have to deal with this menace anymore😀😀😀

[Hidden in reply to tsvieps]

have you tried j and J directly. jjpaf.org/ if your income for 2 is less than 104,000 and you have spent 4 percent on rx you can be enrolled for free imbruvica up to a year. I just started

[tsvieps in reply to Hidden]

This is quite interesting. Is the $104k net income or is it gross the income before Sch A deductions? We are higher on gross, but at this year likely less on net.

Besides our own medical expenses, we are paying medical expenses for our daughter's family as she deals with Breast Cancer. Ironically, our gross keeps going up as our medical expenses go up: We need to withdraw from IRA accounts. On one level, that is why we tried to limit our voluntary expenses over the years and stuff some money into IRAs--to have some leeway for a "rainy day". But we are also eating the "seed corn" and lowering our possible investment productivity in future years.

You have an interesting ID. I met my wife in high school when she came to school covered with Nixon buttons and I with JFK buttons. We both liked knowing someone who cared about more than football games and who was popular. I later shaked hands with "tricky Dick" when he was running for CA governor and lost.

[Hidden in reply to tsvieps]

i used my health centers advocate. she asked me line 5a,5b,line 7 on 2018 tax form. this was the first year of the new form. then after asking me that she asked for a copy of these taxes. then Jand J sent a form saying what amount of money had to have been spent on rx's. I am currently on their free monthly shipment=done by a specialty pharmacy. They say 2020 year is being worked on for all their enrollees. I am waiting on that. I could not get pan because they don't do b-pll. Leukemia and lymphoma society do but at the time they were not taking applications although it appears they are again. My only choice was JaJ. Call your health care advocate. can't hurt to ask

[Pooldude05]

How are you coming along with b - pll on Ibrutinib ? I realize that it is very rare and unfortunately more aggressive than cll

[Hidden in reply to Pooldude05]

actually-it's high risk cll.. the only reason the old statistics looked so bad is all b-pll that are known-most -if not all are p17 deletion and/or tp53 abnormal. Chemo did not work on b-pll just like it mostly doesn't work with high risk cll. I started ibrutinb in January 2019 with alc about 450,000. My alc at last blood test 2 weeks ago is 54,000.

[michaeledward]

$10,000 per year. WOW! So much for "how great it will be" with medicare for all. If existing 65 yr. old medicare beneficiaries who paid into Medicare all of their working lives have to pay $10,000 per year, how much will the younger beneficiaries have to pay since they would have paid substantially less into Medicare than their senior citizen counterparts. And this is only for Ibrutinib. I'm sure there are other conditions that require extemely expensive drugs.

[DelrayDave in reply to michaeledward]

And that is the problem. A few more years and taxpayers will have spent more to keep me alive after age 75 than I earned gross my entire life as a University professor.

[michaeledward in reply to DelrayDave]

I take it that you believe that Medicare for All is an improvement to Obamacare. Myself, the VA covers the entire cost for Ibrutinib, so I don't have a dog in this fight. But judging from other people's comments here, for the most part, private health insurance is covering Ibrutinib at a more or less reasonable cost, whereas, current Medicare beneficiaries are paying $10,000 or more per year. Moreover, the UK with government health care DOES NOT provide Ibrutinb at all which forces everyone to rely on FCR which in many cases is not the best treatment option for everyone. I'm sorry, but I don't believe that one size fits all.

[DelrayDave in reply to michaeledward]

Nothing in my comment implies what you attribute to it. I merely comment that the amount charged for this and similar drugs make coverage prohibitive. This is the case whether a patient is required to pay it him or herself (I could not and would now be dead without Medicare part D), whether private insurance pays for it, or whether a goverment program like Medicare or the VA pays for it. BTW, I am not at all sure that private policies cover IB as completely as you imply. Some doubtless do, but Americans continue to die because they cannot pay for needed drugs. Also do let one of our UK members comment on UK policy. I think NICE has approved it for relapsed pts and for those with certain markers like 17p deletion that make FCR inappropriate. Finally, since you raise the issue (I did not), my own idea on the current debate is to add a public option to the Affordable Care Act and allow people to choose it or other options. Clearly some of us have policies we like. An abrupt shift to Medicare for All would cause too much immediate disruption.

[AussieNeil Partner Administrator in reply to DelrayDave]

Mteany and DelrayDave, please try and keep politics out of this discussion, thanks.

With respect to non-chemo treatments in countries outside of the USA, there is a trend to funding those instead of FCR for those who have deletions that would make FCR ineffective.

Neil

[mrsjsmith in reply to michaeledward]

Yes as Dave says in the U.K. Ibrutinib is approved for those with 17 and 53 deletion.

Colette

[Hidden in reply to michaeledward]

when medicare part d started in 2006-novel drugs did not exist. All available cancer drugs at the time-including tablet ones were covedered under part B

[michaeledward]

Is the $10,000 cost for 420 mg (3 pills) of Ibrutinib per day?

[bayside64]

That amount according to my insurance agent is accurate.

[michaeledward in reply to bayside64]

Yes, but is the annual cost of $10,000, the cost over 1 year for 1 pill (140 mg) per day or for 3 pills (420 mg) per day?

[DelrayDave in reply to michaeledward]

420 per day. For a time after the switch from 3 capsules to 1 tablet Abbvie charged the same for all three doses of tablet. Physician opposition seems to have caused them to charge less for the lower doses. In any case, the approx. 10K is the yearly copay for 420 a day for someone on Medicare with Part D coverage.

[michaeledward in reply to DelrayDave]

Thanks Dave.

[bayside64]

Per year.

[Drewpic]

There are grants out there of covering Imbruvica. I don't pay a penny. Talk to a oral chemo specialist for more details.