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

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Imbruvica cost exact figures

DelrayDave profile image
61 Replies

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.

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DelrayDave
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61 Replies
lankisterguy profile image
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

johnl profile image
johnl

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

in reply tojohnl

28 day packs. 13 a year

johnl profile image
johnl in reply to

I get 90 pill bottles every month

in reply tojohnl

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.

johnl profile image
johnl in reply to

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

in reply tojohnl

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

johnl profile image
johnl in reply to

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

in reply tojohnl

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

Canuck901 profile image
Canuck901 in reply tojohnl

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 ?

in reply toCanuck901

are you asking me or Johnl?

Canuck901 profile image
Canuck901 in reply to

Both I guess

Beargrove profile image
Beargrove in reply tojohnl

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 profile image
BluMts in reply tojohnl

Johnl, are you still able to get capsules?

johnl profile image
johnl in reply toBluMts

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

in reply tojohnl

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

johnl profile image
johnl in reply to

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 profile image
BluMts in reply tojohnl

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

Beargrove profile image
Beargrove in reply toBluMts

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

Ellieoak profile image
Ellieoak

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

Jonquiljo profile image
Jonquiljo

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.

in reply toJonquiljo

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

DelrayDave profile image
DelrayDave in reply toJonquiljo

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.

in reply toDelrayDave

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?

DelrayDave profile image
DelrayDave in reply to

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 profile image
BluMts in reply toDelrayDave

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

Beargrove profile image
Beargrove in reply toDelrayDave

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

DelrayDave profile image
DelrayDave in reply toBeargrove

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.

Psmithuk profile image
Psmithuk

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?

BluMts profile image
BluMts in reply toPsmithuk

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.

Psmithuk profile image
Psmithuk in reply toBluMts

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

BluMts profile image
BluMts in reply toPsmithuk

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.

in reply toBluMts

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

Psmithuk profile image
Psmithuk in reply toBluMts

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

DelrayDave profile image
DelrayDave in reply toBluMts

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 profile image
BluMts in reply toDelrayDave

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.

in reply toPsmithuk

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.

Psmithuk profile image
Psmithuk in reply to

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.

in reply toPsmithuk

realclearpolitics.com/artic...

vox.com/science-and-health/...

ft.com/content/e92dbf94-d9a...

the last one is the uk based financial times.

chrisgrannyuk

Psmithuk profile image
Psmithuk in reply to

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 🙂

BluMts profile image
BluMts in reply toPsmithuk

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 profile image
DelrayDave in reply toBluMts

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 profile image
BluMts in reply toDelrayDave

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.

70s-80s-overlander profile image
70s-80s-overlander in reply toPsmithuk

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.

81ue profile image
81ue in reply to70s-80s-overlander

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.

wmay13241 profile image
wmay13241

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

in reply towmay13241

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.

thompsonellen profile image
thompsonellen

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?

MikeHoff profile image
MikeHoff

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 profile image
BluMts in reply toMikeHoff

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.

IAMSUEBW profile image
IAMSUEBW

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 profile image
DelrayDave in reply toIAMSUEBW

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.

canadagoose profile image
canadagoose

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.

in reply tocanadagoose

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

canadagoose profile image
canadagoose in reply to

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.

in reply tocanadagoose

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

johnl profile image
johnl in reply to

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

in reply tojohnl

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

narl profile image
narl

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/

70s-80s-overlander profile image
70s-80s-overlander in reply tonarl

healthunlocked.com/cllsuppo... -- one year ago

DelrayDave profile image
DelrayDave in reply tonarl

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

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