getting

[Janmae]

How to pay for ibrutinib my doctor said big drug companies help, Just wondering if anyone had exsperience with this also, how do they determine when they will help? In other words what do they consider as income? Do they consider your life insurance

Any info would be appreciated,

Janet

[Cllcanada Top Poster CURE Hero]

Yes.. there are programmes but it varies by country... where are you?

I got ibrutinib on the You & I programme in Canada at no cost, Janssen covered it fully...

imbruvica.com/patient-suppo...

Your specialist CLL team will have all the answers for you... and will work with PAN and the LLS as well... in the U.S.

~chris

[Janmae in reply to Cllcanada]

I am in US state of Wi, was told this drug is $130,000 a year,

[Cllcanada Top Poster CURE Hero in reply to Janmae]

Last figure I saw was $112,000. Certainly not cheap. Do you have private insurance?

Len Keck knows the ins and outs of many insurances...

~chris

[Janmae in reply to Cllcanada]

Len

Keck information about help paying for inbrutinib

[Janmae in reply to Janmae]

No on Medicare part d

[OzzieNick]

Ibrutinib has just qualified for the pbs here in Australia should you happen to live Down Under

[MsLockYourPosts Passed Volunteer]

Click on My communities at the top of the page, then Followers and type in Len Keck. If that doesn't work take out the space between the first and last name. You can then check his posts. Len has posted quite a bit about dealing with drug costs and how the different options work in the US. If you don't see what you need I would suggest that you send him a private message.

[AussieNeil Administrator in reply to MsLockYourPosts]

Or just click here: healthunlocked.com/user/len... - you can send him a PM from his profile page too

[newyork8]

Call the drug company directly...they likely have programs. Also check the website

[lankisterguy Volunteer in reply to newyork8]

Drug company programs only apply to people on commercial health insurance in the USA. Anyone on Medicare is not eligible for assistance directly from the drug companies (by Federal law). But the drug companies do donate funds to non profit organization like Patient Assistance Network (PAN) and they in turn help Medicare patients.

Len

[hkaye]

pparx.org/prescription_assi...

webmd.com/healthy-aging/pat...

These two web sites list all the medication assistance programs for US- the applications are easy to fill out but do have to be completed by your doctor- many of them will only send medication to the doctor and not directly to you but it is earmarked for you- they are "needs based" programs meaning it is dependent upon income and your current insurance coverage. Most of them are also only good for 12 months and vary regarding whether not you can request renewal but worth exploring

Also search clinical trials @ clinicaltrials.gov which is very easy site to navigate to see if the are any ibrutinib trials which might fit your needs and then you're getting medication for life

Even tho FDA approved there is still research about dosage and combinations- I am in NY near NYC and I know there's been several pretty recently

Good luck!

[Ellieoak]

Yes I had LLS. helped me with the insurance co.

[Mamere]

I am in Northern Ontario, also covered by Janssen under You and I program. Starting year two on Ibrutinib so far so good.

[lankisterguy Volunteer]

Sorry, I did not get to respond Sunday when you posted, but here is my usual reply:

It’s difficult to answer without knowing more about your insurance coverage.

If you are on Medicare or will become 65 in the near future, you should apply to Medicare 3 months before your birthday and coverage will start on the first day of your birth month. If you are on conventional medical insurance most of the following does not apply. Send me a Message and I will try to give guidance for that.

Ibrutinib & Medicare Part D copay assistance:

I hope you are on or will apply for conventional 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. Very rarely will your circumstances warrant a Part C Medicare Advantage plan.

Your CLL expert doctor or staff will prescribe the Ibrutinib using one of these 4 specialty pharmacies: Avella, Biologics, Diplomat or ONCO360 and they will get approval from your Part D insurance and send you the drugs by FedEx 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

lls.org/

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 [phone] or email [e-mail].

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

If you have questions, message me or post a reply to this.

Len

[rbg4410 in reply to lankisterguy]

Len - you strongly suggested NOT getting a Medicare Advantage plan. Were you assuming that the Medicare Advantage plan would not have prescription drug coverage or is there another reason? Thanks. Bob

[lankisterguy Volunteer in reply to rbg4410]

I probably should have said that Medicare Advantage plans tend to be as variable as regular commercial health insurance. Many Advantage plans are like HMOs, narrowly restricting which doctors you can see. The PPO like plans can be limited to location (single US state) and a short list of providers in that state. So seeing CLL experts is difficult.

Commercial Health Insurance is notorious for denying coverage - after treatment, and Advantage plans can do the same. Conventional Medicare Parts A & B require the coverage to be decided BEFORE treatment, so there are no surprise invoices months later.

I have heard of a few patients that have Advantage plans that cover all their needs and include prescription drugs like Ibrutinib, but those seem to be rare.

So my caution should have been to consider it very carefully & skeptically- don't believe all the advertising about low monthly costs, etc. And get a good independent broker to help you evaluate Advantage (Part C) vs. Parts A,B,D and a Medigap/Supplement type F.

Len

[Janmae in reply to lankisterguy]

what do you mean by a independent broker? Would you mean a lawyer? I have asked about the cost ibrutinib and my doc tells me not to worry he has a deal with the manufacturer and can get me a brake. I really don't know what kind of break as the drug sells for 130,000 a year..It would be nice to know what kind of break that is.

Also my insurance Lady tells me that part f would not accept me now that l have been diagnosed

[lankisterguy Volunteer in reply to Janmae]

I was talking about someone probably like your "insurance lady" to help find a type F Medigap /Supplement policy. If you are new to Medicare (turning 65 or changing from a employer plan to Medicare) you don't need to answer the questions about pre existing conditions like cancer.

I have read on this site that some CLL patients have gotten a type F policy even though they disclosed the cancer diagnosis, it was about $100/ month more expensive.

However the type F Medigap policy only covers copays from Parts A&B- procedures, infusion, drugs given in the hospital.

Pills like Imbruvica taken at home are charged to your drug policy Part D that should cover the bulk of the costs of Ibrutinib. You should check this out now, as you only have until Dec 7 to change your Part D for 2018.

Go to medicare.gov/find-a-plan/qu...

Fill in all the info on the first page and follow the steps carefully when you get to the page about current medications, enter Imbruvica 90 capsules for 30 days from RETAIL pharmacy. Then you can see the total annual costs of all prescription drug plans for your zip code, and pick one for next year, and start changing now.

Len

[Newdawn Administrator]

Janet, unfortunately I've had to delete your private email address as they’re not permitted or advisable to publish, particularly on a post you haven’t restricted to the community. Members can contact you easily on here by sending a private message which remains private and doesn’t compromise your privacy.

Best wishes,

Newdawn

[Janmae in reply to Newdawn]

Thanks

[Janmae in reply to Newdawn]

Thanks newbie on here