I'm 70 years old and diagnosed with CLL 3 years ago. Been told I need to start Ibrutinib ASAP. Problem is, the monthly cost will be more than my fixed income. Does anyone know if there are any programs available that could help defray the cost?
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For a start, google the name of the drug and cost help. There would be a couple (at least) of places that help. Johnson and Johnson being one of them. Where my hubby goes, they have social workers you see to help with that sort of thing. Or a finance department. I am so sorry I do not know more, so far hubby is still in w n w.
Linda
What can I tell you?! I am in Canada and pay 12.30 a month in a small family run pharmacy. I guess if I went to Walmart would be even cheaper. You guys on the other side of the pond have to change something.
Hi Pwebster,
As your profile shows you are in the US and therefore likely have Medicare, there was a recent highly detailed post 2 days ago regarding copay assistance resources for those on Medicare. Pharmaceutical manufacturers can only assist those with private insurance but not for those on Medicare.
healthunlocked.com/cllsuppo...
I hope that you are able to find access to the help that you need that is affordable or even free in some cases. The PAN Foundation and LLS Leukemia and Lymphoma Society will likely be able to assist.
Hi pWebster,
Ibrutinib & Medicare Part D copay assistance:
I hope you are on Medicare Parts A & B with the US government and have a Part D drug policy with a major pharmacy company. The best would be if you also have a Type F Medigap / Supplemental insurance policy. It takes unusual circumstances to favor a Part C Medicare Advantage plan, they often restrict the doctors you can choose.
Your CLL expert doctor or staff will prescribe the Ibrutinib using one of these 4 specialty pharmacies: Avella, Biologics, Diplomat or ONCO360 and the specialty pharmacy will get approval from your Part D insurance and send you the drugs by FedEx or UPS overnight each month.
As long as your gross income (look at your last year's tax return- nothing else matters) is less than $80 to 89k per year, then that specialty pharmacy should also help you apply for copay assistance through one of these:
rxassist.org/patients/res-c...
If the specialty pharmacy does not help, then contact the LLS and ask them to assist you
The Leukemia & Lymphoma Society
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.
Programs that Assist with Medication Co-pays
Some organizations offer to help insured patients that are having difficulty paying the co-pays for their medications or their insurance. These programs are for very specific diseases or medications. Some of these programs include:
Caring Voice Coalition was established early in 2003 to serve comprehensive needs of all individuals affected by serious and chronic disorders, through collaborative efforts and partnerships with organizations established to serve those patient populations. Current programs include: Insurance Reimbursement and Advocacy, Vital Relief (need based financial assistance limited to certain disorders or medical conditions), Compassionate Care (counseling and counseling referrals) and Public Advocacy. Visit: caringvoice.org/
The Chronic Disease Fund, a non-profit organization founded in 2003. Its focus is to provide assistance to those under-insured patients who are diagnosed with chronic or life altering diseases that require the use of expensive, specialty therapeutics. Visit: cdfund.org
The HealthWell Foundation, a 501(c)(3) non-profit organization established in 2003 to address the needs of individuals who cannot afford their insurance copayments, premiums, coinsurance, or other out-of-pocket health care costs. Visit: healthwellfoundation.org
The National Marrow Patient Assistance Program and Financial Assistance Fund. The Marrow Foundation is the fund-raising partner of the National Marrow Donor Program (NMDP). Funds from this program help patients pay for searching the National Marrow Donor Program (NMDP) Registry and/or some post-transplant costs. Applications for Patient Assistance Program funds must be submitted by an NMDP transplant center. Eligible patients may ask their transplant center coordinator to apply for one or both programs. Call 1 (888) 999-6743 or email patientinfo@nmdp.org.
Visit: marrow.org/PATIENT/financia...
The Patient Access Network Foundation is a non-profit 501(c)(3) organization dedicated to supporting the needs of patients that cannot access the treatments they need due to out-of-pocket health care costs. Visit: patientaccessnetwork.org
The Patient Advocate Foundation, a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. The Patient Advocate Foundation's Co-Pay Relief (CPR) Program provides direct co-payment assistance for pharmaceutical products to insured Americans who financially and medically qualify. The Program offers personal service to all patients through the use of CPR call counselors. Visit: copays.org
Patient Services Incorporated, developed in 1989, is a non-profit charitable organization primarily dedicated to subsidizing the high cost of health insurance premiums and pharmacy co-payments for persons with specific chronic illnesses and rare disorders. PSI is committed to assisting persons with chronic medical illnesses in accessing health insurance and pharmacy co-payment assistance. Families requiring assistance in maintaining the high cost of their health insurance premiums or co-payments are offered assistance based upon the severity of medical and financial need. PSI offers a "safety net" for persons who have expensive chronic illnesses and for those persons who "fall through the financial assistance cracks.
Visit: uneedpsi.org
please message me if you need further info.
Len
I was able to get approved through the PAN Foundation over the phone. It has been a huge relief. The Ibrutinib is working beautifully for me since January. Kind regards. Sally (USA)
I live in the USA and I do get financial help. Do you have an Rx plan that you pay for? My plan pays for some of it, govt. special help pays for some, and some other corp., etc. pays for some...........actually there's an employee in my oncologist's office who calls the specialty pharmacy, Diplomat Pharm., and they find the help I need. Your oncologist should do the same. My total cost each month is $8.25 co-pay for the IB. When I was first diagnosed and they told me they were prescribing IB first thing I asked was how much does it cost, I want to know if I can afford it. The oncologist said..........nobody can afford it, don't worry, we'll get funding for you........and they did. For the past year and a half the IB has been sent UPS overnight from the Pharmacy to my home once a month and I give them my credit card to pay the $8.25. Hope this helps. Talk to your Oncologist and hopefully they'll find the funding for you through the Specialty Pharmacy. The woman who takes care of this for me in the Dr.'s office is wonderful........very efficient and very caring.
The co pay can be as high as $5000.
At first I paid no co pay at all. They even found a group who paid for my co pay, but then when I found my co pay would be $8.25 I said I'd pay that myself. My oncologist office staff worked all this out for me. I didn't have to look up anything for funding, nothing. And it doesn't depend upon your income either, so talk to your oncologist.
Are you still working? If you are on medicare and have a part d they do not cover the cost. I have a friend in NY city that pays $10.00 a month,because his wife is still working. My grant paid $2800.00 for the first month then $600.00 each month. Im happy for you that you don't have to worry about applying for grants
I would appreciate if you could share your copay assistance. I worry about finding assistance for the following year all the time. My oncologist office doesn't help with any of this I had to find my own source. Someone on HealthUnlocked gave me the Pan association info. and am so grateful for that.
I am on Medicare and buy Part B, Prescription Plan and the 20% Medicare doesn't cover. Costs me over $500/mo for all of it, plus co pays of course on Rx drugs. I got a grant from PAN that covers the first two months of Imbruvica, after that the Prescription Plan I have, which is Aetna, covers it for the rest of the year with no co pay from me. And, as I said the Specialty Pharmacy in the US, Diplomat, found the grant sponsor for me in one day. Last year I paid $8.25 a month as a co pay but this year for whatever reason there is no co pay. I'm not complaining but I did tell them I'd be more than willing to pay the $8.25, but they said it wasn't necessary. (Actually I really don't like getting things for nothing, but.......I do pay for my Rx plan)
I also have Atnea as my part d. I pay $59.00 a month plus my Blue Cross $216.00., which I don't think will pay for imbruvica. And I'm on Medicare. I have a grant from PAN and the first month copay they covered for me was $2800.00 now they pay $600.00 a month. The grant will run out in th 10th month so I will have to pay for 2 months. . I will have to call Aetna but I don't think they will cover the copay for Imbruvica. I also pay for my copays for my other scripts. Diplomat pharmacy bills the PAN association for my copays for imbruvica.
About the same with me, but this year PAN is paying for a year and no copays. It's complicated, different every year and I have NO idea why.
When my Oncologist started me on Ibrutinib he told me there was a non-profit that would be responsible for paying my co-pay. He said if you made less than $250K per year the non profit would subsidize your co-pay.
I started Ibrutinib on April 2nd 2017 and have not paid 1 penny. So, if your annual income is less than $250K you should pay zero.
Please share the non-profit you are speaking about . would be greatly appreciated to all of us.
Thank you.
I'm not sure who the non profit is. When my oncologist introduced me to this treatment he said there was a non profit that had been created to receive a percentage of the IB sales as a donation. These donations are then used to pay the co-payments of people who don't earn enough money to afford the co-payments.
Might try PAN.
Janssen runs You & I and the LLS has co-payment relief
I have to ask my oncologist but I found my own grant. They didn't help me?. .
If you have used your real name you might want to restrict your post to community only - click on the v, then edit, then scroll down and click on community only.
If you are 70 and in the US, I assume you have Medicare and Part D coverage.
Have you signed up for periodic newsletters from Medicare, which provide information on some of the ins and outs of Part D? If not, you can sign up for the newsletter at:
q1medicare.com/PartD-Stayin...
Once on this page, note the links in the box at the upper left. You can begin to explore various Plan D options available for your state. Every state has different providers, fees, and drug coverage. Costs for plans and drugs vary from provider to provider.
By entering your state, you can select various plans that are available to you, and compare how much they would cost. You can then enter the drugs you are taking to see how much each plan contributes, and how much of a co-pay you would have in each of the 4 stages of Plan D. Due to the high cost of Ibrutinib, you essentially sail through Stage 1, 2, 3, and into Catastrophic Stage 4 with one month's supply. This comparison can help you select the best plan to meet your needs. (I've always wondered on the choice of name for Stage 4. Is it catastrophic for the insurance company or for patients? Maybe both. Either way, interesting choice.)
First thing to do is to contact your plan to get prior approval for covering Ibrutinib. They will send you a letter of approval, which starts the process. However, the drug is not dispensed from your plan's pharmacy, so you need to choose a specialty pharmacy.
My research determined that there are 4-5 specialty pharmacies that supply Ibrutinib. They are scattered around the country and ship the drug to you every month. Each of the pharmacies has a person whose job it is to provide knowledge and help in finding funding to cover your co-pay. My pharmacy has a wonderful woman who sent me email attachments with the forms I needed to fill out. She took care of sending forms to my doctor for him to sign. She told me what documents I needed to send her, including my last year's income tax forms to show my income level.
Once she had all the proper forms, she reached out to both the Leukemia and Lymphoma Society (LLS) and then the Patient Access Network (PAN) to obtain grants to cover my co-pays. PAN had no funding at the beginning, and I was grateful to receive an LLS grant to cover the first few months. Just as that grant ran out, PAN had enough contributions and I was lucky to get a grant from them that has covered about a year. The money will be used up in a few weeks. I'm keeping my fingers crossed that a new grant will cover the year ahead. The process has been seamless for me. All payments are administered by the pharmacy, and all I have to do is take the medication and heal.
Needless to say, I am filled with gratitude for the help of many strangers who contribute to the foundations, and for my angel at the oncology pharmacy who takes of the paperwork -- not to mention for Ibrutinib, which is restoring my energy and focus.
This is possible! Good luck with making your way through the initial labyrinth. May Ibrutinib work well for you.
Please call or go online to check out the drug manufacturer. Most have some sort of patient assistance that goes by income and is separate from PAN. It is worth the time and research. I just found out that AstraZeneca has patient assistance program for acalabrutinib if you are on Medicare. I am calling Monday (US) to see what the income requirement is. Best of luck to you.
It was approved by the US FDA on November 13, 2013 for the treatment of mantle cell lymphoma. On Feb. ... In 2017 the FDA approved ibrutinib as a second line treatment for graft-versus-host disease. It was the first drug approved by the FDA for this condition. Latest Updates "Generic Ibritinib cost in USA" Low price Click The link...medixocentre.com/ibrutinib-...
Ibrutinib and Medicare 
Imbruvuca cost one last time.
Individual Cost
