Imbruvica cost exact figures: I now have from my... - CLL Support

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Imbruvica cost exact figures

DelrayDave
DelrayDave

I now have from my part D insurer (United Health Care) the exact figures. It seems I was right the first time, at least according to them.

In December, 2019, Abbvie charged $13, 040.53 US for 28 420 mg. tablets. In January, 2020 they raised the price to $14,036.52, an increase of $996. This is more or less their pattern, an increase in January of each year. Then in April the cost was again increased, this time to $14,733.36, a further increase of $697. The two increases total $1692.83 for a 4 week supply, a 13% increase. That totals an increase of $22006.79 per year. The total cost of one year of Imbruvica 420 mg. tablets, assuming United Health Care is accurate (and I assume they are) is $191,533.68.

My copay last year was $652 a month after I went into the "catastrophic stage", which happens in January of each year. Then it went up to $701.83. Now it's $734.

I see no reason why it can't go up again next month if Abbvie decides to do so.

62 Replies
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lankisterguy
lankisterguyVolunteer

Hi DelrayDave,

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Have you contacted the LLS.org to see if they can arrange copay assistance for you?

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lls.org/

For personalized disease, treatment or support information, please contact one of our Information Specialists:

1-800-955-4572 Live Chat Email

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I got copay assistance from PAN, but there are several - rxassist.org/patients/res-c...

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Len

I get $176,160 per year. Copay after donut hole is 5%. So 734 x20 =14,680 a month. times 12 mos. =176,160

28 day packs. 13 a year

I get 90 pill bottles every month

I looked at your info. I see your on a trial. i guess they give you capsules. However delray dave and i get the 28 tablet packs.

I'm on a trial, but I get my Ibrutinib thru Medicare. The venetoclax is the trial drug. I don't think the trial has anything to do with how I get my Ibrutinib and I can change specialty pharmacies if I choose. I use Biologics in North Carolina. My last copay which was for March was 700.17. It was paid for by PAN. You should ask your pharmacy if you can switch to capsules or maybe shop around at a new pharmacy. A couple of pills a month make a big difference in annual copay at these prices.

john

I thought capsules had been discontinued-who knew. since i;m also on both imbruvica and venclexta-how's it working out for you?

I haven't been to M D Anderson since January because of COVID. At that time I still had 1 cell in 10,000 in my blood. In October I had 2 cells in 10, 000 in my bone marrow, that was at 12 mos combo. I'm probably UMRD by now, but don't expect too much more. I've got less than 6 mos more on trial.

john

i just added the venclexta in january. a ways to go

Canuck901
Canuck901
in reply to johnl

What’s the trial name ? How did you get Venetoclax added to your Ibruntnib tretnent ? Great news for you

How long have you been on Ibruntnib and how long on Ibruntnib and Venetoclax combo ?

are you asking me or Johnl?

Both I guess

Beargrove
Beargrove
in reply to johnl

I get my Imbruvica from Diplomat Pharmecy out of Flint , MI. My 5% copay is $460 a month for 60 capsules.

Tablets are cheaper but if you go to a reduced dosage you have to get capsules as they are 140 mg each. The tablet is 420 mg- the full dose.

BluMts
BluMts
in reply to johnl

Johnl, are you still able to get capsules?

johnl
johnl
in reply to BluMts

The trial I'm is the IV trial at M D Anderson. It's closed by now. I've been on the combo for about 19mos and Ibrutinib alone 3mos longer than that. Yes I still get the capsules.

john

just a question-do you get from MD ANDERSON itself or thru a 3rd party mail order pharmacy?

I get my Venetoclax at M D Anderson's pharmacy. I get my Ibrutinib from Biologics, but can get it any where I want.

john

BluMts
BluMts
in reply to johnl

Thanks for answering John. I did not know that anyone could still get the capsule.

Beargrove
Beargrove
in reply to BluMts

I get capsules because each is 140mg and I only need 280 mg a day. Tablets are for 420mg and that would be too much

Call PAN.org. Or LLS.org to get some help paying for this.

Did Abbvie change the prices or the specialty pharmacy that United uses for Imbruvica? There are so many players with their hands taking their share that I wouldn’t guess who is charging what.

Unfortunately that is the way things work these days.

last year when i was using my part d i also paid the 652 dollars he mentioned. I don't know now because i get it direct from Johnson and johnson

Good point. Diplomat told me the cost to them from Abbvie did not change in April, and that they could not understand why my copay went up. I should call United. I did. United had all the precise figures I have posted and was positive the cost from Diplomat for the drug had gone up. I suppose I can call Diplomat again to see where the discrepancy is.

Is it possible your part d plan changed the percentage split? Seems to me i read that depending on the the plan-28-32 percent is allowed?

I have checked again with Diplomat. Abbvie has indeed increased the price again. The figures in my post are exactly accurate. Two increases 4 months apart. All my original comments were correct.

BluMts
BluMts
in reply to DelrayDave

😁😁😁. Don't give up Delray. I would not..but then I go to bed exhausted every night from the days battles.

I get my Imbruvica from Diplomat and my copay did not go up in April

I can't know why that is. Perhaps you ordered earlier in the month than I did? My order went in on the 18th I think.

I find the large amounts US members have to pay horrific. How on earth do you manage? If people can’t afford the correct treatment, do they just fall by the wayside?

Chrisgranny, I completely understand your sympathy for people in the USA on Medicare or other insurance who have to pay these small percentages which in the face of the expensive drugs in the USA end up in huge huge costs to patients. But as you are writing from the UK I hope you won't mind my gentle clarification that at least they can get the drugs if they can afford the copay ( and I understand there are many organizations there that help some with the copay cost).

I do not think we British can possibly be distressed for our US friends, as few of us here in most cases have ANY chance of getting medications like Ibrutinib unless we have Expensive private health insurance or are millionaires several times over or get on a trial. The Americans with CLL are very lucky in the treatment options open to many of them, compared to most in the UK.

What about those who can’t pay? Is there any help for the really poor ?

I don't know personally of how people without health insurance or Medicare do. However have read posts here of people saying they can't afford IB and are not covered and others have advised them of organizations they can apply to. However my daughter who spent nearly a decade working there says the poor do suffer and do not have the support we have here.

I know that a huge percentage of the population get health insurance with their jobs. However because that's so important to them and the dependents on their cover they end up being Terrified of being laid off or neededing to stop working. We don't have have that fear here.

I have a detailed knowledge of how fantastic Medicare can be. I have a brother and sister-in-law who choose a good Medicare package when they retired and quite honestly I've been gob smacked at the high standard of their medical care and AFTERCARE along with the very reasonable deductions they have to pay. Neither of them have CLL or have need for any of the newer expensive long term drugs. But 7 hour heart surgery carried out Four days after diagnosis with the most amazing after care in hospital and then by nurse visits and physio visits at home and then followed by weeks and weeks and weeks of 3-weekly rehab physio resulting in a new fit person whose body has produced and accepted new circulation leaves me feeling the system worked very efficiently in that case. It has worked well for their complete family and others I know.

I got involved in the post above, because I do get an uneasy and apologetic feeling when so many of us here, comparing our system with the US system feel everything is better here. It's swings and roundabouts and depends who and what we compare. It would be easier to compare our health care to that in other European countries.

I do understand what you are feeling and thinking and that you care about how others are faring.

medicare itself is great. However the prescription coverage was only started in 2006. It was crafted in such a way to get it passed.

Most of the newer drugs and catagories did not exist then.

no cap was put on prescription co-pays. the 5 percent catastrophic script part has no cap

Thank you for your considered reply, BluMts, it’s interesting and frightening at the same time.

DelrayDave
DelrayDave
in reply to BluMts

Perhaps I am mistaken, but I thought NICE had approved ibrutinib for relapsed CLL and as first line for those with 17p deletion and possibly in some other cases. Am I wrong?

BluMts
BluMts
in reply to DelrayDave

Nice guidelines say no IB for untreated patients, no treated patients unless relapsed within 3 years of treatment. Yes, 17p can get IB. I guess there are always exceptions to any rule.

Guess NICE would love to allow all patients the best treatments, but their funds are limited. And the new drugs cost beyond the worst nightmares of years ago.

Some say the NHS needs to benefit from Government introducing a a monthly health care contribution ON THOSE WHO ARE NOT WORKING or are just poor. As is done in so many other European countries. But politicians realise that people here don't want this. The general feeling is that health care should be "free". I find this strange as nothing is free. But that's how it is.

chrisgrannyuk- without the USA system that allows drug makers to make big profits it's likely a lot of these drugs would never have been developed.

USA in effect subsidizes the rest of the world. Too bad for us though.

I don’t want to argue, but if the drug makers are making big profits, I don’t really think the USA is subsidising the rest of the world.

I realise I am fairly ignorant of the USA system.

It's not so much "the USA system"; it is the world trade system. Yes, it is complicated. Many of these complex medicines are introduced FIRST in the USA, with the first 1 or 2 years of patient payments helping to pay the pharmaceutical company's research bills. Then, many of these complex medicines -- widely available in the USA -- are for several years accessed only (or primarily) though "clinical trials" in other countries.

The several proposed plans for correcting this problem all end up raising prices everywhere outside of the USA -- so it is complicated! My understanding is that there are serious questions as to how some of these complex medications will be available outside of the USA after the non-USA clinical trials are completed. These problems didn't exist twenty years ago because the pharmaceutical costs of research (including paying for failures) were not so high twenty years ago.

[Roughly one-third of the GLOBAL pharmaceutical industry is based in the USA & a large proportion of new complex medicines -- especially in recent years -- is first approved for marketing by the USA Food & Drug Administration.]

Thank you for these, I haven’t read the whole thing but I get the gist. It is an eye opener, and is so complicated, and really needs sorting out so it is fair for everyone.

I didn’t mean to upset anyone, or bring politics into it, but it seems to be there anyway.

Thank goodness I live in my quiet little corner of Wales 🙂

Chris, I think the problem for US patients is that the law in the States allows the drug companies, legally to sell in the States at a price that counties elsewhere do not allow.

Think UK for eg. has ability to grant the drug companies a license to sell in UK and that license can stipulate the cost or they can have some input later. I do not understand the details of these licenses.

I may be wrong and someone please clarify. Whatever, I'm always stunned at the cost of drugs in the USA. And I can understand their resentment after they feel their government has already used their taxes, often, to aid in discovery of new treatments and then they pay more for the drugs later than others do. ???

DelrayDave
DelrayDave
in reply to BluMts

You are correct. In order to get the drug companies to support the introduction of Part D (prescription drug coverage) into Medicare, Congress passed a law allowing them to charge whatever they want. It is illegal for Medicare to negotiate prices. By law Medicare must pay whatever the price is for any drug approved by the FDA. Individual insurance companies are permitted to set their own formularies, and some plans do not cover certain drugs. I do not have any information about whether or not any Part D plans omit IB. My best guess (and it is only a guess) is that all plans cover it. It is so costly that the government immediately covers it as patients immediately move into the catastrophic stage where taxpayers cover 95% and patients pay 5%.

BluMts
BluMts
in reply to DelrayDave

Thanks for that detailed explanation Delray. In the past I've asked Americans why their drugs are so expensive and they've mostly looked too distressed about the matter for me to persue it.

Quote, "How on earth do you manage?," unquote. Certainly some of us in the US try to keep working as long as possible, try to emphasize "daily treatment" -- & end up not taking vacations. For the good or for the bad, most of us have a fairly clear understanding of the real cost of excellent medical care.

I certainly, personally, have felt an incentive to get as many years as possible before beginning "dramatic treatment" and before getting re-treatment.

My wife & I consciously are saving up money toward the next treatment (it was expected this spring, but I may get to hang on for another 12 to 18 months).

As I have said over & over, "Thank goodness I'm still working!" [I know that my 3 children would try to help me financially, if that was needed.] [5 years ago, I got right back to work after rituximab monotherapy -- and, 3 years ago, I got right back to work after 2 weeks of sepsis.] I wish everyone the same good fortune!

Life is what it is. Each of us tries to do the best that one can.

re Getting back to work after sepsis - me too, just took sick days and back to work (this is when I could barely move and had no energy after imbruvica failed and I had the brief experience of life on no meds). Having a desk job helps with going back to work when you can barely walk.

Big pharma is ripping off the Americans who are unfortunate enough to have to take Imbruvica. It is national disgrace.

technically not true. abbie gives a co-pay card which practically makes it nothing to most takers below the age of 65. Once on medicare however a person cannot use the direct from manufacturer card.

they cannot however give those co-pay cards if on medicare because of how the medicare part d plan was originally made to prevent manufacturers from pushing their products to part d users.

I get that pharma needs to recover costs, but they had over 7 billion in sales in 2019. Why did they need two increases in one year?

There is also a "hidden" cost increase which occurred last year. Imbruvica in caplet form was dispensed as a 30 day supply (90 caplets.) When they switched to the blister pack, it was for a 4 week supply (28 days) at the same price!

BluMts
BluMts
in reply to MikeHoff

Not only that Mike. But in only supplying the new tablets in specific dose form, if the prescription is changed, the patient has to THROW AWAY the too high or too low tablets already issued and get a new set of tablets. I keep wondering why the drug company made the change. Does anyone know on whose ownership the change was made to tablet. It would have made the current owner able to show more profitable forecasts which can be so useful if you're planning to sell.

Dave, I don't know your financial situation, but have you asked your doctor to assist in applying to Johnson and Johnson's prescription assistance. There are certain criteria to be met, but you might be able to get imbruvica free. It's worth checking into as it definitely worked for me. I couldn't even afford the monthly copay after Medicare Part D insurance.

DelrayDave
DelrayDave
in reply to IAMSUEBW

Each time I have checked, I am not eligible. Fortunately we were frugal and maxed out our 401k. So I can pay this. My concern is for those who cannot.

This is horrifying. I have been on Venetoclax and Ibrutinib since November 2019. My bloods are stellar. My husband is still working so our insurance is good and I pay $50 a month for each drug. He is thinking of retiring by the end of the year. Guess I’d better look into what will be covered when he does. Big Pharma looks like the devil.

if you are on medicare part d and don't find some kind of co-pay help= the 2 drugs together will be about 19,000 a year

remember the co-pay assistance cards directly from the manufacturer CANNOT be used on medicare part d

Aren't the individual companies that offer part D able to make separate deals? Like if you had a supplement from Blue Cross instead of Aetna or United Health Care. Or is that all covered by Medicare as opposed to the insurance provider.

medicare part d has a set formula. it doesn't change the cost of the drug. expensive is expensive

kff.org/report-section/the-...

however if your husband retires and gets some medical coverage they might pick up the co-pay

I'm not sure, but I think 19,000 is high because you only have to go thru the donut hole once. Not once for each drug

john

since i take both. the imbruvica last year was 11,000. i now get it free

the venclexta is about 650 dollars a month for 12 fillings. i get copay assistance

together about 19000

I get it through PAN foundation, you can also get it from Johnson and Johnson, even with 2 in household and 99,000 a year income last I checked a couple years ago. jjpaf.org/eligibility/

DelrayDave
DelrayDave
in reply to narl

Again, thank you. I followed your very helpful link, but I am not eligible.

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