Individual Cost

[Hatbridges]

I have CLL and have been taking Imbruvicia for 2 years. Because I have an increase in income, Johnson's and Johnson will no longer provide it for me. My cost will be over 13 thousand a year so I will stop taking it. I am single and cannot afford the cost!!

[Cllcanada Top Poster CURE Hero]

That is a co-pay cost?

[AdrianUK in reply to Cllcanada]

Wow! Thing is tho, what if you relapse? Do you have to work so many hours?

[albie58]

Have you tried to work out something with the drug company? Perhaps your dr or hospital can work with you and them?

[Spacee]

Hi! Do you see the box to the right that says Related Posts. There is one that says Cost assistance for ibrutinib in the USA. While you are asking about a different drug....there will be links to places that help with cancer drugs. Ours in particular is the Lymphoma Society. And Ken the man who posted it said you can sent him a message if you have trouble finding help.

Linda

[starsafta]

Income can go up for a variety of reasons. I've often wondered about the fine line of being a penny over or under the stated income level for some of the foundation help with paying for treatment. Does earning $10 more suddenly disqualify eligibility? It must be a shock to suddenly have this assistance taken away.

You don't say if you are employed and have private insurance, or if you are retired and have Medicare, which might affect eligibility for some of the foundations that grant money for CLL treatment costs. I encourage you to read lankisterguy's thorough list of resources to help with funding. healthunlocked.com/cllsuppo...

Have you been in touch with the Financial Assistance person at the pharmacy from which you get Ibrutinib? The angel at my pharmacy is my go-to person for everything regarding funding. She knows all the possible resources, sends me the appropriate forms, gathers all my necessary information, and submits them. I urge you to contact the person who does this at your Ibrutinib pharmacy.

I recently received a notice from my Plan D provider that I had received approval for the new single 420mg tablet of Ibrutinib. I had no idea that a request for this approval was necessary or had been initiated. I contacted my Patient Advocate "angel" today to find out if I would have to start going through the four Plan D stages to again get to the Catastrophic Stage, or if the insurance company would view it as continuation of the medication.

She informed me that she had initiated the approval, sending the form to my oncologist for his signature, and she submitted the application. Now that's proactive! She also said that the tablet would be viewed as a continuation of the original prescription. This is great relief, as it means that my recent PAN foundation grant will not be used up quickly.

I hope you are able to find funding so you can continue to take Ibrutinib, particularly if it is helping. Good luck!

[CLLmoxie in reply to starsafta]

What pharmacy do you use? In us? I would like to know who offers anything close to that kind of service. Thanks

[lankisterguy Volunteer in reply to CLLmoxie]

There are 4 specialty pharmacies that are the only places you can get Ibrutinib in the USA. Onco360, Diplomat, Avella & Biologics. Your CLL expert/doctor will be the one that chooses which of the 4 they use. Your CLL expert's staff will normally work with a funding expert at the specialty pharmacy to get approval from your health insurance company (or part D insurance on Medicare). I know that Onco & Diplomat also help with getting copay assistance.

If the above does not work well for you, contact the LLS lls.org/support/financial-s...

And they will help guide you to one of these:

rxassist.org/patients/res-c...

Len

[Hatbridges in reply to lankisterguy]

Thank you. The medicine will be over 13 thousand a year through Diplomat.

[lankisterguy Volunteer in reply to Hatbridges]

Did you ask about copay assistance from Diplomat and LLS?

Groups like PAN (Patient Assistance Network) will often have a copay guideline/limit of 5X the federal poverty level in your area. For Metro NYC your gross income on last year's tax return should be less than $80k/yr without Medicare and $89k/yr with Medicare. If you qualify they will knock that $13k down a lot.

Len

[Hatbridges in reply to lankisterguy]

I live in Georgia. Will definitely look into it. Thanks

[starsafta in reply to CLLmoxie]

I started on Ibrutinib as standard treatment just after it became available, so even the doctors and their staff were not aware of the ins and outs of getting insurance approval and funding. When I called my Plan D insurance provider, the representatives had no understanding of specialty pharmacies for these new expensive drugs, and assumed I could pick it up at a local network pharmacy. Clearly, I wasn't going to get any helpful information from them.

I'm a research junkie, and immediately went online for information. After many clicks, I discovered that Ibrutinib is dispensed only by a few specialty pharmacies, I researched them all. How information is presented on a web site can be telling, if one is savvy about communication. It seemed to me that the four pharmacies are logistically scattered around the country, perhaps to make it easier or quicker to ship drugs to patients in different regions.

I chose Onco360, not only because of the their description of their philosophy and services, but because they are located in my part of the country. They have an office 10 minutes away from me, and I decided that it would be more convenient to go pick up my medication rather than be trapped waiting around all day to sign for a delivered package.

I downloaded their application form and gave it to my oncologist, who was thrilled that I had done his homework for him. Once things were in the works, I called Onco360, and was put in touch with their incredibly helpful and efficient Patient Advocate. She immediately took over, sent me forms to fill out and return (all PDFs, so quick responses), sent forms to my oncologist for his signature, sent me application forms for LLS and PAN funding, along with a list of tax and income information I needed to send her, and is proactive about keeping the funding going.

She immediately got me an LLS grant to get started. PAN was out of funds at that time (they tend to open at the end of the year when many people give donations). She has a direct feed to PAN and knows the moment it opens again. I also keep a link to PAN in my bookmark bar, and was checking it every day as I saw that my LLS grant was coming to a close. The day after I saw that PAN had opened, I emailed my angel at the pharmacy. She responded that she and her assistant had noticed it the afternoon before, and they had stayed late into the evening to process requests for all of us in her database. Because she had all my income information and signed forms on hand, she was all prepared to submit it, and she happily shared that my PAN funding had already been approved.

I would hope that the other 3 specialty pharmacies have equally efficient and caring patient advocates. I tell mine all the time that she has the best job in the world, knowing that her efforts are helping so many people heal and live better lives.

I'm sure I don't have to tell you that it can be extremely stressful to consider how we will pay for these drugs that keep us alive. Knowing I have my angel on my side has removed all the stress, except in the months when I become aware that current funding is about used up. Then I worry about whether the foundations will have money to help us, and its a waiting game of hope and faith.

With more of us on these drugs requesting funding, and with new tax laws that disallow contribution deductions, grants could become even more of a problem. The first year, my PAN grant was 11K. This year, it was $7600. I'm assuming they are lowering grants so funding can be spread out to more people.

We gotta do what we gotta do.

[kathymac52 in reply to starsafta]

I was so disappointed in the new tax law in the United States....because I could see that contributions would fall........so scared for the future of our country and cancer patients...

[starsafta in reply to kathymac52]

Time will tell. Hopefully, those who can will still donate. We may have to get even more creative.

[kathymac52 in reply to starsafta]

Well, if you figure out a more creative way.....please let me know....I am very new to all of this....main ingredient in Imbruvica/Ibrutinib is made in China.....( with the new tariff war looming, we all could be sunk.) Don't mean to be a Debbie Downer....but I am nervous...

[starsafta in reply to kathymac52]

I understand your concerns. We all wonder how we'll afford these drugs that keep us alive.

On the other hand, I was raised by a mother whose mantra was "everything is attitude." I'd be rich if I had a nickel for every time I heard this. Now I am thankful, as it has blessed me with the attitude of not worrying about things that haven't yet happened, and to deal productively with what does.

It also allows me to choose to live in gratitude. For one, I am grateful to the dedicated researchers at these pharmaceutical companies for giving their all to finding solutions and cures to illnesses. When I was first diagnosed, none of these new targeted drugs were available, let alone in development. I cannot find it in my heart to knock companies that fund the creation of potentially healing drugs that allow us to function and live.

Lots of faith, hope and trust go into the mix.

[Indolent]

I wonder what sort of public image the drug companies will get if this becomes common?

[Hatbridges in reply to Indolent]

I am thinking about going to the media in Charlotte where Johnson and Johnson is located!! Anyone interested in going Veitch me?

[Hidden]

Please try to get funding through your Rx provider. I have Diplomat Pharmacy who sends me my Rx every month and they find funding for me and they work with one of the employees in my Oncologist's office. Check with your Oncologist about finding funding for you and with your Pharmacy who fills your Imbruvica Rx.

[Kokobean]

I too think there must be assistance out there; it may just take some digging.

[ladyprescott]

Unless your income is around $65,000 in the US you should be able to get a grant. There are many available, but yes, it does come with income restrictions. Check with the maker of your Imbruvica, they told me when the time comes, they can help with a grant. This can be alarming, true. But, don't stop your meds. Best of luck. Carole

[Hatbridges in reply to ladyprescott]

Unfortunately my income is above 65 and I have looked everywhere. I am single and raised my boys alone so I had to go where the money was. I was laid off for several times and it took a toll.

[MartiP2009]

Please contact your RX company’s financial department. They will work with you to find a grant. Also make sure you let your oncologist know what is going on, most if not all oncologist clinics have grants also.

[Hatbridges in reply to MartiP2009]

Thank you I have.

[Jeffmarn]

So sorry to hear this. We are so fortunate that our insurance pays for my husbands Imbruvicia. It costs $11,000 per month

[Hatbridges]

Wow!! It is Great! You are so fortunate. How is he doing on the medication?

[fussybritches]

Thank God for the NHS in Great Britain!!!

[Peggy4]

I second that. For all its flaws we are so very lucky to have it.

Peggy

[gsanchez]

My husband uses Diplomat pharmacy and they have an assistant program that pays for the copayment. We only pay $10.00 out of pocket every month. Don't give up there are plenty of programs that can help you

[gemit2000]

Now closing in on 64 and worried about needing therapy in the future I was about to take out "Medicare for Dummies" from my library to prep for next year, but seems the replies on this post might be the primer I need.

There was something I can share from seeing a video today on the Patient Power site. A woman named Nancy Novack created a very comprehensive site of financial assistance for cancer patients called Nancyslist.org. I immediately bookmarked it while giving it the title "Fill prescriptions yet stay out of bankruptcy"