Well, Medicare paid $12,000 a month on my first five months on Imbruvica, and a health foundation covered the remaining $3,000 a month.
Now I ‘be been told the health foundation money has run out ( even though I was told I was good until July). So now it appears I need to pay $3,000 a month for my Imbruvica. Yikes. Apparently, my husband and I make “too much money” to qualify for assistance. But we are not making any more money than when we qualified for support initially. We are 71 and 72 years old.
This is so confusing, depressing, upsetting. Ironically, this worry about paying for the medicine makes me feel a lot worse than having the disease.
Any words of advice, comfort, experience?
thank you.
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DogmomLM
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I feel ya, not a good feeling. There are drug trials available. There also might be some other organizations that will help. I am sure others will help with some info. Lymphoma society, pan, etc.Also starting in 2024, we on medicare will have a $2000 yearly copay cap on out of pocket Part D drug plan.
Hope some others can give you more info.
Over the years I have heard of one fund running dry and another coming through. Hopefully that will come through for you.
In Bidens state of the union address, he said the 2,000 limit starts in 2025. Further research I did shows there are loopholes that the drug companies can take. For example, drugs that were patented within the last 9 years are exempt from the 2,000 limit. Drug companies just have to change the formulary slightly to start the patent over from the beginning making them exempt again.
My interpretation was that the prescriptions that can be negotiated by Medicare beginning 2026 are the ones that have a nine year exemption from being patented. This is different from the $2000 yearly cap. Hope I’m right.
Me2 as well. I don't see Repubs pulling any medicare benefits to those already on medicare. I suspect congress will do what they usually do. Raise the payroll tax on SS and medicare.
It sounds like most of the CLL drugs will remain the same cost as now b/c they'd continually be in the 9 year patent lane and thus excluded by the 2K cap (but hopefully still under the catastrophic cap, or the bill might have made things worse)...unless there's another clause that reduces their cost, even if they are in their 9 year patent window.
SNIP: "I have found that my CLL expert doctor's staff, the specialty pharmacy that sends out the Calquence / Ibrutinib / Venetoclax and the LLS.org all have been helpful to me in the past. In each case it was a different one of those three that found a copay for me. So if you haven't contacted all of them, I suggest you try all three to see who can help."
I have been above the typical guideline income levels- but the LLS and / or the specialty pharmacy or my doctor's staff have worked out ways to cove my copay.
There should be some kind of assistance for you...I know there are lots of options .Your clinic should be doing the work not you..prayers you get the help you need!
If you have Medicare Part D (vs Medicare Advantage plans), aren't you limited to something like a $7400 OOP, and then the meds becoming very, very cheap under catastrophic coverage for the rest of the year?
Sounds familiar. There is a point under Part D where you go into the “catastrophic coverage” stage and are responsible for 5% of the (list price) of the medicine. Regardless its all terribly unfair.
Well, I'm still waiting for the "very cheap". I'm on the hook for 5% of Pharmas cost to my Part D. Figure 5% of about $14k-$15k/ month. Not to mention the $4k upfront copay each new year
Here is the way it works for us anyway on Medicare with drug coverage part D. The first fill of the calendar year that we pay for is ~$3,100, which takes us through all the deductible phases of the coverage to catastrophic coverage, which is 5%. Since Imbruvica is ~$15,000 for a fill of 28 pills, it then costs ~$750 a fill (5%) subsequently for the rest of the year. So you have $3,100 plus 12 @ $750 for a total of $12,100 . (It takes 13 fills to cover a year) It should not be $3,000 per fill. It's still not cheap, but better than 13 times $3,000.
It seems that nearly all funding has dried up, both for Rx support and medical expenses as well as premium costs. I understand that it has something to do with the US Government and budget issues. I'm not sure of the connection, but that is the guess among people I know in Washington, DC.
Went on-line. I was curious about the cost of imbruvica. Here's what I found at drugs.com/medical-answers/i... (The pricing as of April 2022. I know many drug companies just took a avg. 5%+ price increase.)
Official answer by Drugs.com
Imbruvica costs $484 per capsule/tablet regardless of the strength (70mg, 140mg, 280mg, 420mg, 560mg).
This works out to $13,546 for a supply of 28 tablets/capsules. (Annual cost = $178,581.79)
However, most people will not have to pay this much because most insurance plans and Medicare cover the cost of this medicine.
Copay assistance and support is also available through the YOU&I Support Program.
According to the Drugs.com price guide which bases its price on the Drugs.com discount card which is accepted at most U.S. pharmacies, the cost for Imbruvica 560mg is around $484 per tablet or $13,546 for a supply of 28 tablets depending on the pharmacy you visit. Prices are for cash paying customers only and are not valid with insurance plans.
The cost of all strengths of Imbruvica (70mg, 140mg, 280mg, 420mg, 560mg) is the same: $484 per tablet.
However, most people will not have to pay this cost with most insurance plans and 99% of Medicare Part D and Medicare Advantage plans covering this drug.
Copay assistance is also available under the YOU&I Support Program: Phone 1-877-877-3536 menu option 1, Monday to Friday 8 am-8 pm and Saturdays 8 am to 5 pm. This program also offers support and contact with a nurse who can answer your questions, help address treatment challenges, and provide drug and disease information.
People with commercial insurance may be able to get Imbruvica for as little as $10 per prescription.
Imbruvica, 2&3G BTK'S are going to cost a lot unless u have some assistance. I have Medicare & Part D. U r going to pay $4kish co-pay at the start of the year, then 5 % of what the Part D insurance cost is from Big Pharma. The below KatieBlue stated monthly cost of $14k is about right. I take the capsules, not tabs, which is 39 day & similar cost. In essence, you are looking at $12k - $13k/ year outta pocket without help.
Good day, I like your bright collage art header artwork! I understand the weight of the financial stress that came with Dr.s orders to start treatment. My insurance denied coverage for Calquence and wanted to start me on another cheaper brand which would have costed $2k/month. We pushed forward and spoke with the financial assistance department of the Pharmacy. The denial up to be a blessing🙌🏻 as we were directed to Astra Zeneca AZ&Me program for NO cost drugs. The qualifying phone interview was 10 minutes. I believe they give precedence to people on Medicare. Last year the qualifier was you can’t make over $62k a year. It may be more for 2023, and higher for married people. Astra Zeneca automatically renewed my enrollment for 2023. . Give them a call, you will be on hold for awhile, but it’s worth the wait. 5 months in w Calquence has worked to bring my blood levels just above normal range (WBC was 248, Red blood 9 when zi started) The side effects are minimal; for forget-fullness and agitation, both which may be due to cancer condition vs the drug. I am not sure if the blog allows numbers and URL here - 1 (800) 292-6363. You can apply via azandmeapp.com/prescription...
We are in the same exact boat for Venetoclax. We applied through Duke Hospital for a manufacturer’s discount, but haven’t heard anything. You may want to ask the pharmacy about that option. 12K was covered for the first six months through our insurance and the rest by the Lymphoma and Leukemia Foundation. This year, it’s 3K out of pocket for January, although your should check to see if you have a maximum out of pocket for prescriptions. We do, and I believe it will only be $800 a month after the first 3K (they counted the LLC payment of 4K towards our out of pocket after the insurance covered 6K. This is the healthcare system in the U. S. I can only be grateful that we have the most incredible oncology team at Duke and that we can put off some home improvements to be able to pay for the medicine.
I'm no expert on Medicare Part D, but Medicare paid $12,000+ per month on my cancer drugs and I had to pay $650 per month (5%). How do you arrive at $3,000 monthly co-pay??
I don't know where you live, or who makes Imbruvica, but I am on Calquence and AstraZeneca has a co-pay program. I have $26k per year allotment, so it more than covers the cost for me and it is NOT based on income. Call the company that makes it and ask if they have a co-pay program. WAIT! It looks like the DO have a program. Here you go and good luck!
Hello, here in India, there is no state funding for any ailment, or for any age group. I. at 72, managing ibrutinib there therapy for last 2 yrs, of my own meagure resources. Howevere, there is a solace for we are considered a hub of generic version of alopathy drugs, inclding that of BTKs. Monthly supply costs around rupees 20000 equal to around 300 dollars, with same afficacy, as thr haematologist says. Not aware if it is available and approvef in other countries.
My cousin who is often ill told her doctor, these are supposed to be my golden years! So, where's the gold? He told her the only thing gold about the supposed golden years are your urine! LOL.
Just cant believe how in the USA we have to deal with these insane prices! My father has CLL. He lives in Morocco. Imbruvica costs 12k USD a month over there. A lot! but his health insurance aka CNOPS pays for it all, no out of pocket expanses. We the people have to do something about this. This is beyond greed and corruption of govt.
Hi, lots behind this. Corporate greed in Pharma, Oil, etc industries plus we subsidize the negotiated cost that other countries gov't's, negotiate with Pharma. Imbruvica is a "cash cow" product lifecycle stage for AV. They have never lowered the price in 10 years in light of newer BTK's; nor have have they ever put R&D $ into improving it (side effects). They will ride this horse for as long as they can. Imbruvica is in the top 10 (or 5) of drugs the gov't spends $ on. As with other industries, Imbruvica sales price has little to no relation to manufacturing cost ( made offshore also). Many would be shocked if they heard (found out) what the mfg'g cost is. There really is no R&D done by AV, as they acquired the developer, Pharmacyclics, post-developement.
Don't think govt is entirely corrupt in this case; more unwilling & incompetent on handling the issue (same as many other issues that affect the people), as our lawmakers get $ from Pharma lobby, not to mention other reasons.
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