I have been taking Imbruvica for CLL for four years with good success, and have been paying the ridiculously steep price for the drug with a combination of my health insurance, out-of-pocket savings and grants from the PAN Foundation, which have recently amounted to about $14,000 per year. Suddenly, and with no explanation, the PAN Foundation has canceled my current grant, informed me that no funding is available, and put me on a waiting list. All of the other non-profits which have historically provided financial assistance for CLL are also currently not providing any funding. In effect, the money I have been relying upon is gone, and it seems as though CLL has suddenly been forgotton or eliminated by the non-profits. The situation puts me in at risk, as I really cannot afford to make up the difference. I am having no luck attempting to discover what is actually happening, how long I might have to wait, and just how serious the problem I am facing is. Does anybody know what is going on, and what to expect?
No grant money for CLL: I have been taking... - CLL Support
No grant money for CLL
I recently heard both PAN and LLS ran out of money. Have you tried Johnson and Johnsons, jjpaf.org ( or . com or something) they are the company that distribute Ibrutinib and a lot less likely to run out of money.
john
I contacted them directly. Got denied. Apparently I make “too much money.” I really don’t.
Same with me. The grant ran out but my financial coordinator at doctor's office will be looking for alternatives. After all these years?
My grant also unexpectedly ran out. So I applied to Johnson and Johnson Patient Assistance. They will actually supply the drug through their pharmacy. I did go without for 2 weeks while applying and waiting for a decision. So don’t delay.
Unfortunately, TheTraveler appears to be domiciled in Greece. The Johnson and Johnson patient assistance program helps folks who are being treated in the US.
Best,
Mark
I didn’t notice he was in Greece. I thought the PAN grants were also for US patients. But maybe I’m wrong about that.
Are you in the U.S.? Thank you for your informAation.
I am a US citizen living temporarily in Greece. My home is Albuquerque, NM. I have already applied for assistance from Johnson & Johnson and am current waiting for a response.
I feel your pain! I have been on CLL meds since 2014- first Imbruvica and now Venclexta. I have never run out of money on the grants until last week and am now told no funding anywhere is available. I have my doctor's office trying to see what they can do. The $8000 grant ran out when they paid $424 of the $700 copay. So now I have authorized the balance to be put on my credit card so my pills will be delivered today. Hopefully something will be resolved by next month.. Fingers crossed. *Admin edit: this comment removed as inappropriate. * The specialty pharmacy is faxxing an application to my doctor who will fill out and I will sign and provide proof of income and perhaps get someting of financial assistance that way.
Thanks for your response. Johnson & Johnson is providing financial assistance for people taking its CLL drugs. Call them and ask if they can help you. It can’t hurt. I am applying now. The process might take 2-4 weeks, I am told, so don’t waste time.
They do not show Venclexta on their list of meds. 
if I remember correctly Genentech has their own assistance program for venclexta.
Genentec has a great program for those wanting venetoclax. If a couple makes under $100,000 adjusted gross income.They will give you the drugs free. My knowledge is based on a phone call to them yesterday. I am on origional medicare/ G supplement and standard plan D.
They will ship them directly to you omce a month. You have to get your Doctors office to get it rolling with them. Great program offered by them.
they will deny you ( as they denied me), if you make “too much money.”
try the LLSsociety.com they usually make awards that are applied for in December, so you have to watch for the opening. Also HeathWell foundation
Both told me that charitable contributions have really slowed dramatically due to Covid and recession - so they have far less money to distribute.
They are out of funds as well. I talked to them yesterday. I was told they have never seen the funds dry up this severe.
with your health insurance can you check their list of covered drugs to see if there is a similar drug to ibrutinib? Acalabrutinib? Does your insurance have an out of pocket maximum?
I discovered the funding problem on February 1st when my support expired. All 5 funds that did help CLL patients are now "closed and fully subscribed", meaning they are not accepting new or renewal requests.
While I can't seem to get an answer as to "Why" this is happening, I wonder if it is associated with the law that will go into effect in 2024 that limits out of pocket to $2,000. I'm suggesting the pharmaceutical companies are hanging on to dollars, putting the money aside for research that will be cut short in 2024. Or, could it be that the US government is involved as it related to budget cuts? That may be a stretch, but w/o answers, I'm trying to see a connection out there.
LLS has a paragraph on their Co-pay Assistance page that says "All of their funding comes from the pharmaceutical companies."
It will be 1/2025 before the $2000 part D copay cap kicks in.
I have just experienced the same thing. Was told that charitable contributions have slowed dramatically as a result of Covid and recession. People aren’t giving, can’t give, the way they used to.
The real problem is the greed of Big Pharma. They really could charge less than $15,000 a month for Imbruvica. They really could.
Of course they could. It's pure GREED! And they increase the price every year, never lower it.
Friends, it might not hurt to also let your senators and representative in the House know about this dreadful situation. They all have staffs that we pay for who are assigned to help their constituents. Is this a long shot? For sure, but it might help and at the very least, adds to the picture they have of the situation many US citizens have to get the care they need. Carolyn
yes! We need to do that! I pay $900 a month for my Calquence which is a lot for any retired person. They keep focusing on diabetics but what about those of us who have other life-threatening diseases?
Thank you Carolyn. These drugs we are discussing cost an average of about $175,000 per year. The essential problem is the shameful cost of the pharmaceuticals. If they were priced fairly, there would be no need for financial assistance. Our politicians have given a lot of lip service to the problem over the past 10 years, with no change at all. At this point, I think writing to our so-called representatives has little chance of short-term success, which is what all of us contributing to this conversation need. We cannot go without our medication for an extended period of time. The grant money available to us seems to have disappeared over night. Lof us are stuck, with nowhere to turn.
Well, its been fixed for seniors on medicare who have Part D come January 2025.$2000 out of pocket cap comes into play!!!!!!
The limit only applies to older meds. It remains to be seen how CLL treatments and that limit will or will not apply.
Really? It is plausibile, for sure, but I have not heard of the cap being qualified like this. I am very interested to know where your info comes from. Thanks!
The feds will not be allowed to negotiate on newer types of drugs, so there is large question on whether those newer and coming down the line treatments (I think it's 9 or 12 years, depending on how you classify CLL treatments) will be able to be covered on Part D since premium increases are also being held to a certain max rate for 5 years.
I believe there are 9 years (maybe more?) from date of FDA approval before discount would apply. If the manufacture changes the make-up even slightly - - such as the recent change of Calquence from capsule to tablet - - the clock starts over.
Two things I might add. Number one, have you discussed this with your CLL specialist? Many times doctors know of programs that others might not know about. And number two, you have been on Ibrutinib for 4 years now. If your doctor can’t help with payment assistance programs, you could ask him about reducing the dosage, which in turn would lower your out of pocket cost. Don’t do this without checking with your doctor and don’t do it if he or she says no, but it is worth a try. As long as you can see your doctor regularly, they might be able to test you at a lower dosage, and would be able to put you back to full dosage quickly if necessary. Good luck with this. I have nightmares about paying for my ibrutinib if I ever have to get off the static trial!
Becky USA
Thank you Becky. I have experimented with reducing the dosage in the past, taking 3 pills every 4 days, with no real problems, but unfortunately I am almost out of pills now, so I have little to experiment with. Also, note that it is not only Imbruvica/Imbrutinib for which the grant money has suddenly disappeared - it is for ALL drugs taken for CLL. The only open possibility (that I have found) is Johnson & Johnson’s financial assistance program, for which I have just applied. I hope it works. I feel sorry for those taking drugs made by other companies. I guess they are stuck. I feel like we all have been summarily thrown into the ocean off the back of a ship and told to swim.
Hi I am in South Carolina USA same situation. Pan foundation just doesn’t have the grant money available so my oncologist has an advocate and they fill out papers to Johnson and Johnson the manufacturer. I have been getting Imbruvica free from the manufacturer for two years now I’m told this is very common and your oncologist should help you apply for this patient assistance. I just saw my doctor yesterday and she told me very few people are ever turned down. See if that works for you
Thank you Lizshanti. I just learned about the J&J program. Application in progress!
I think we can blame at least part of it on COVID…they blame it for most everything else! Good luck with J & J!
Possibly, your doctor can refer you to a social worker. The social worker opened up a world that I didn't even know existed. I am now receiving my Ibrutinib via the manufacturer, Johnson & Johnson at no charge. I would not have known how to connect with them if it wasn't for her.
I wish you wellness!
Thank you! I appreciate your good advice. Fortunately, there is a great social worker/patient advocate at my hematologist’s office. My application to J&J is under way.
Wonderful! Good Luck & Good Health to you!
have you tried the CLL Society? They may be able to help find assistance.
CLLSociety.org
They also have terrific educational programs
How temporary is your stay in Greece? Push comes to shove you may be able to get a different BTK for free on a clinical trial back home in USA.
Maybe do a combo treatment so you can try to get into remission and not worry about funding year after year.
A+V or Z+V. Lots of combo trials now.
Greetings Friends. Thank you all very much for your input last month. I am writing to inform you that, as of today, THE PAN FOUNDATION HAS GRANT MONEY AVAILABLE FOR CLL MEDICATIONS! This is only true if you were on their waiting list. Look for an email from the Pan Foundation with a code you will need to apply. You have only two days to apply, so don't delay. BEST OF LUCK, and STAY HEALTHY!!!
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