I don't think I financially qualify for assistance but the cost of Imbruvica will keep my wife working longer than planned and keep me off of M
Medicare. Anybody have ideas. Cost of Imbruvica on Medicare is about 12K/year not in our original retirement budget
Es,I have a modest retirement and my hematologist SPECIALIST was able get me some assistance.
I would start with your doc as they have access to assistance for you; at least in my case it worked that way.
Jeff
thanks
i have gotten imbruvica free from manufacturer for the last 2 years and i am on medicare part d. i do not use it for imbruvica . I could not qualify for Pan or leukemia society at the time. the johnson and johnson assitance program sends it to me -my oncologist.hematologist facility did it for me.
thank you for info I will look it up thanks!!
Could you tell me where you live that you can get imbruvica without using Medicare?
I live outside of Atlanta
i applied to jandJ foundation. they have a few special requirements for medicare part d to apply but it is not co-pay assistance = they give you the entire drug. they have theracon pharmacy ship it to you i live in massachusetts
thank you!!
How did you apply to get it from the manufacture for free ? My dad is looking to retire and majority of the fund are either closed for Cll or make a couple hundred dollars over the limit
To qualify for assistance and out of pocket with Medicare the drug is over $1000 a month not really affordable
Please help
Canada
I am inCanada andI pay 80$ per month for Imbruvica in my province. Some other provinces charge even less. It comes then to about 1000 $ can per year
I imagine you have to get a doctor prescription??
Yes, every few months, my Onco has to write to the Provincial Gov. so they continue paying for this. I guess, it is too expensive to order on a yearly basis in case I mutate or develop a toxicity
thanks
I live in Saskatchewan, Canada and Imbruvica (and pretty much all cancer drugs) are completely covered by our government health care plan (no charge to patient). I had assumed that was true in every province.......I am wondering what province charges a fee for Imbruvica?
There could be only one province that charges high fees for medications and it is Quebec.
This is a common question and there are some of the answers in the box on this page labeled " Related Posts
*Cost of Imbruvica
healthunlocked.com/cllsuppo...
*Help with Imbruvica cost-2019 cost changes?
healthunlocked.com/cllsuppo...
*Imbruvica cost exact figures
healthunlocked.com/cllsuppo...
*Out of pocket cost for Imbruvica
healthunlocked.com/cllsuppo...
*Imbruvica cost healthunlocked.com/cllsuppo...
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Also, I dug up one of my answers from 3 years ago:
Medicare Part D has many complexities and few straight lines, the retail cost listed by Pharmacyclics div of AbbVie is a myth that is not based on reality. Comparing that myth to the retail price in other countries will just make you angry at our US congress. Don't bother.
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Before you assume you don't qualify for copay assistance, contact the LLS for help and they should be able to guide you to copay support somewhere.
The Leukemia & Lymphoma Society
healthunlocked.com/api/redi...
800-955-4572
Dedicated to funding blood cancer research, education and patient services. Offers a variety of services, including an Information Resource Call Center, limited financial assistance and co-payment assistance (depends if funding is available), support groups and a patient matching program.
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Programs that Assist with Medication Co-pays
healthunlocked.com/api/redi...
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Len
May I ask, why do you not want to apply for Medicare Disability? If you have a severe form of CLL that impacts your ability to work, etc. your age has nothing to do with qualifying.
good thought thanks
Hi Es,
Don't assume you won't qualify for assistance, in that the amount of income allowed is quite broad for the Johnson and Johnson program. At least it was 3-4 years ago. A husband and wife could make up to $101,000 per year and still qualify. A couple with two children could make up to $140,000/yr. My husband has been receiving Imbruvica free for the last 3-4 years. It really takes a load of worry off, and anxiety levels improve immensely. Annual renewal has been worry free. I'm not positive, but I'm fairly sure that Imbruvica is donated to Johnson and Johnson by the maker.
Escondido Bobcat
Thank you I will check it out
Johnson and Johnson IS the maker of Imbruvica.
I’m newly diagnosed with CLL so pretty inexperienced re medication etc but don’t you qualify for free prescriptions if you have cancer. I’m a type 2 diabetic and all my medication is free and I’ve never really understood why but just assumed that anyone with cancer would also get free medication. Just thinking that CLL is the same as diabetes and is a chronic condition. (I am in UK). Thanks, Sue
The free prescription situation is obviously quite different in the U.K. with its socialised health system Whitewillow.
Qualification for free prescriptions with type 2 diabetes is dependent on needing meds like Metformin. Diet only diabetics don’t qualify unless they are over 60, in which case they are exempt due to age qualification.
People with cancer do qualify for free prescriptions here although some doctors unfortunately do seem to misinterpret qualification as being for cancer related treatment.
Newdawn
Hi Whitewillow, -
As Newdawn suggests, estaff01 is in the USA- the hint comes from "Medicare" a USA medical insurance program for people over age 65.
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Len
and if one is under 65, there is Medicare Disability. for those of us whose have major, life impacting disabilities. You don't HAVE to be over 65 to qualify for Medicare Disability.
Medicare is also Australia’s universal health insurance scheme-not just a term used in the US.
Thanks Rosetintedglasses, I learn something new every day here.
Len
I’m in the UK Whitewillow and - sadly - medication such as this isn’t free on prescription. The NHS only pays for certain approved drugs. Newer drugs for treatment naive patients with CLL in particular such as Ibrutinib are only available via private health insurance, clinical trials or the cancer drugs fund. It’s wrong. If the drug is available it should be available to all like it is in places like Germany. These newer therapies are likely to save the NHS in the long run. Hopefully, they’ll be in the system sooner rather than later. So many conditions suffer from this inequality, not just cancer.
Good that’s awful - thanks for the update! S
what ? i thought the NHS paid for imbrutinib?
If it’s your second line treatment, yes. But I’ve started treatment this week and they could only offer FCR even though I’m unmutated 11q and it’s not the best course of action for me. I’m very fortunate to have health insurance through work and so have gone privately and am on acalabrutinib. As far as I am aware this is not available on the NHS as a front line treatment either. Venetoclax has just become available via the cancer drugs fund ... so, yes and no regarding the NHS paying for Ibrutinib. Depends on your treatment history.
Do you have a supplemental insurance with a drug plan from an employer? That could reduce the cost of the drug, though it all depends on coverage—co-pays, out of pocket, etc. I found that it didn’t take long to reach “Catastrophic” level coverage with Ibrutinib—maybe two months into the year—and at that point the cost is a small percentage of the price tag.
My Imbruvica is free because the specialty pharmacy affiliated with the medical center handles all the work with the foundations for me. This year is was PAN who helped, next year it is Healthwell. Perhaps you can shop around for a pharmacy that specializes in cancer drugs and that works with the foundations?
Do yo see a CLL specialist? Specialists esp those at teaching or research hospitals sometimes have ways of getting around the co pay cost outside of normal financial assistance programs. A consult with s CLL specialist might be worthwhile. For a list of specialists check out cllsociety.org
I go to Mayo Clinic in Rochester MN they have a group dedicated to getting assistance for their patients who go thru their speciality pharmacy. They do all the work fir me. It’s wonderfully if you don’t qualify for one they go on to the next till they find you one. My Doc said said that some of the foundations are like what he called “laundering money”. Paid fir by the pharmaceutical companies do we don’t file complaints on drug cost. Good luck finding g someone who can help you!!!
it's done this way-for better or worse-because in 2003 when part d was passed-ALL ways for a drug company to influence what a patient got was removed. the assistance companies give to under 65's cannot be used on medicare. On the other hand none of the specialty drugs existed in 2003
I was able to go to my oncologist and they pointed me to sources that cut my annual $13,000 (US) annual cost by 50% each of the past two years. Our retirement will be modest at best. This one drug will consume 20% of our retirement income. My wife is working another three years (and she is a breast cancer survivor after a double masectony in 2015) as a part-time RN so we have enough to cover the drug and keep food and a roof over our heads. That is what a capitalist healthcare for-profit model breeds. You are not worth much as a senior in a consumer driven capitalistic system. I also went to Johnson and Johnson and they on occasion helped to cover some of the annual cost - you have to apply annually. I am now on Calquence (new and improved Imbruvica) and that is even more expensive. The manufacturer, Astra Zenica is not as liberal as J&J was with help. Good luck to you, God bless you.
Thank You I don't understand all of this easier. Why make a life saving drug so expensive that most Americans can't afford it
this has been discussed before. the drug and our disease are 'orphans'. orphan drugs get special'economic considerations' to get companies to produce them. there are not that many worldwide patients that use these drugs. if you divide the billions pharmcyclics revenues on imbruvica by it's yearly cost you'll find that there are not that many users say compared to a blood pressure drug. Just the way that is. the other issue is medicare part d that was only passed in 2003. Prior to that there was no medicare drug coverage. there was cancer drug coverage under part B but those drugs then were infusions. Part d was actually hard for george w bush to get passed i t almost did not. it's the way it is because that was the only way to pass it. None of the 'specialty' drugs existed at the time. Trump has made several attempts to fix the catastophic cost issue. However competing interests in congress-on both sides-have prevented him from doing so
Apply to the Johnson and Johnson foundation...you may be surprised they allow for higher earnings.
thanks
The Venetoclax people, Genentech, covers it for 17p del singles with aggressive disease (my doubling time is 4 months!) receiving under $75K a year. I mention my markers because I don't know if disease severity affects who they pay for or how much. I have really really aggressive disease.
Hi you should apply for assistance. Try PAN and LLS. THEIR FUNDS ARE STILL open. All they can say is no. I just applied and am all set for 2021 from PAN. GOOD LUCK. let us know how you make out. 🙏🏻❤️
Hi estaff01 I replied to myself lol. I meant to
Reply to you
Apply for assistance. All they can say is no.
Apply to the PAN foundation and LLS. THEIR FUNDS FOR CLL ARE STILL OPEN.
They take your adjusted gross income. Johnson and Johnson you have to meet a out of pocket amount per year to qualify. I didn’t qualify. But PAN is awesome can apply on their website or over the phone and you know immediately. Good luck. Let us know how you made out. God Bless 🙏🏻❤️
thank you
PAN paid my imbuvica copay several years ago, before I had Medicare Disability. The specialty pharmacy associated with my oncologist took care of everything.
I am currently enrolled in a clinical trial and pay nothing for my imbruvica. I started out with infusions of Obinituzimab, followed by Imbruvica. I am 17p deleted and am now in remission. I'm surprised that nobody has suggested that you consider joining a trial. Best regards, Nancy
I will definitely bring it up.. How long did you take imbruvica
most trials -i said most-require you to be treatment naive or failing on the drug your on
I just spoke with my trial director and she told me that many people have participated in more than one trial. I think they decide on an individual basis..
My clinic arranged it through PAN and Medicare Advantage AARP United seems to pay the rest. I take IMBRUVICA since two years and I am back to near normal at age 86. Exercise and nutrition are important for IMBRUVICA therapy to function.
Hello friend, I qualified for Social Security Disability after my doctor would not allow me to continue teaching elementary school due to repeated respiratory infections. It took awhile, but once that happened, I qualified for Medicare. This eased the burden on my family. So I would encourage you to explore this possibility. As a frame of reference, I was 54 when diagnosed, 56 when I left teaching and had two years of long term disability negotiated by my union, then on to Medicare. Keep us posted, okay? We care about you! Carolyn
I took a look just now at how Imbruvica is being covered for 2021 on Medicare, and unfortunately it is still pretty bad. I last looked at its coverage in 2020 and the total was like you said about $13,000 for twelve months. For 2021 it will be pretty much the same regardless of which Part D you utilize; although, in my region of South Florida the numbers were best with companies such as Wellcare or Mutual of Omaha or Clear Spring. They all were coming in at about $10,700 for the year.
The reason that almost every Part D is resulting in a similar annual amount has to do with the staging system for Part D Plans. After Deductible you enter Initial Coverage, and Initial Coverage ends when total medication retail cost for all of your medicines reaches $4,131. Then you are in the GAP during which you pay 25% of retail cost. You exit the GAP when total cost has reached $6550, and are now in Catastrophic Coverage. In Catastrophic Coverage you pay 5% of retail cost. I could get more technical, but this is enough for most of you to understand what is happening to you on Medicare with Imbruvica.
Since the retail cost is estimated to be about the same with each different Part D plan, and the amount is so astronomically high, you will enter all of the phases with this one medication within the first month of the year. You did not read wrong. In January you enter deductible stage, then continue into Initial Stage, then enter GAP stage, and finally enter Catastrophic Stage all in January. The Pharmacies are listing the Retail cost of the Default Dose of one 420 mg tablet per day at $10,769 for thirty days. So January is all she wrote for us with a January cost of $2,946. Once we leave January we are in Catastrophic coverage the rest of the year at 5% of cost or $695.19 per month.
I haven't looked into Patient Assistance Programs for Imbruvica, which many manufacturers offer for a lot of very expensive drugs. The truly sick thing about these companies, is they offer Patient Assistance Programs to younger people on Commercial employer health insurance plans, but say no to those of us on Medicare. Think about it. Those able to still work and actually earn a decent income get help, and the older Medicare non working population is told to struggle and not be able to afford their needed medication. Oh Well, It is what it is. There may be other groups offering help to us patients on Medicare with the cost of grossly expensive medications, but I haven't tried to research it yet. I'm sure much information about that has already been disseminated on this site; unless, there aren't any.
I'll be three years into Watch and Wait on April 18, and initially upon diagnosis i was upset with the concept of Watch and Wait Then I came to understand why we hope we never start treatment, due to the side effects possible with treatment, so I started being happy I wasn't on treatment. Now these days I really don't want to start treatment, because the severe cost would affect my wife and I significantly too. I just had a six month visit and saw my own blood work before the meeting with the Hematologist. I realized i went from 39,000 to 60,000 WBC in three months with Lymphocytes going from 24,000 to 45,000. I was somewhat depressed because I feared she might say it was a sign to start treatment. Fortunately she wasn't too worried, and explained it is the Hemoglobin number, platelet numbers, and frequency of infections, and those were down a little but still alright.
It is sad that I now fear starting treatment, as much due to the horrendous cost of the medication as to the potentially wicked side effects. What a great situation; cancer growing in me, treatment if started also dangerous, and the economic effect of treatment very damaging too. Maybe National Health Insurance aint such a bad idea.
Carl
America has to really reform the medical system. total disaster . Sorry to hear this man, My Father has CLL, he lives in Morocco, a developing country and his insurance ,CNOPS, approved him for free Imbruvica as everyone else. only catch is you have the pay the first month, 10 000 us dollars, but you get it all back.
Do you have an oncologist you are seeing? Their office can assist you in qualifing for a finanical grant. List your ADJUSTED income, not your gross income on the application. In quire if you are in the "donut hole". Medicare will pick up most of the cost, and the grant will cover the balance. Imbruvica is now like $15k a month and will continue until is is "off label" and becomes "generic" then the price drops!!
On Medicare you reach catastrophic coverage (in 2020 I understand it's $6,350 out-of-pocket) and your medical costs go way down. My husband has exceeded the cap and the excess has been covered.
I'm 67 and I'll continue working, at least part-time. I just feel blessed that he's alive, so it's a small price to pay.
thank you!!!
Fill out a form for patients who need financial help at Johnson & Johnson web site. They have helped my husband for the past year when I didn't think we would be able to qualify for help.
Financial help for Imbruvica
Cost of CLL Drugs in the USA
Employer's insurance vs. Medicare for Imbruvica
Imbruvica 
Imbruvica
