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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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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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. ???
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%.
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.
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.
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!
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.
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.
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.
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/
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