*I am new here

[Glasstop]

Is there help for higher income individuals on Ibrutinib?

[Cllcanada Top Poster CURE Hero]

Welcome...

In assume you mean financial help and are located in the U.S... still employed?

Scroll down the list a few feet, there have been several discussions on co-pay assistance in the past 36 hours...

~chris 🇨🇦

[jeandorinski]

Got my statement from my insurance company this week. My imbruvica is $13917. a month. I pay $50. Have you talked to your insurance company? My doctor's office arranged it for me.

[Hidden]

depends on how higher income you are and if your in usa your suppossed to be on Obamacare . are you asking for co-pay help.

[Jonquiljo in reply to Hidden]

At least where I live, “higher income” is in excess of $250K a year. After taxes (more than a small problem), you earn too much for any assistance plans, but will likely be burning retirement cash to cover Ibrutinib co-pays ($12-$14K Medicare, and $20-25K private - under 65 - insurance).

That’s why W&W is such a double edged sword. Think of what this stuff will cost 10 years from now. If we are older - our incomes will likely remain stagnant, but med costs will not. I won’t even think of dual inhibitor therapy. Science and medicine are improving for CLL, but the economics of health care are not.

Oral parity laws - at least in the USA, are a glimmer of hope.

[Hidden in reply to Jonquiljo]

in general you are correct. However since i started imbruvica in January. I have medicare part d. 13 fillings of 28 tablet pack of 420mg. will come out this calender year 2019 to 10,000 in co pay.(actually 9997.00).

[Hidden in reply to Hidden]

It does this by the way because the imbruvia make had to rebate me 2700 dollars in this plan which put me past the donut hole in january .

[Hidden]

go here. you may qualify jjpaf.org/

[Cllcanada Top Poster CURE Hero]

Here is the Pharmacyclics (ABBVIE) program for co-pay relief

You & Imbruvica (ibrutinib)

imbruvica.com/patient-suppo...

[pilantd]

This conversation is already giving me a headache. I'm alive because of my job and the health insurance that comes with it. However, the union that represents our agencies employees has decided to tell their members that because I have CLL that I'm no longer qualified to be the general manager of our public agency. It breaks my heart that people in the United States don't all have access to affordable healthcare.

[virdieblue in reply to pilantd]

Is that legal??

[thompsonellen in reply to pilantd]

They probably can’t do this. They have to accommodate you thanks to ADA which protects people with medical conditions

[Smakwater in reply to thompsonellen]

I understand pilntd's statement. This is not a slam dunk game over.

Comments relative to U.S.A.

When I was diagnosed with CLL my performance level energy and reliable productive abilities were already significantly compromised adding to the challenges of both working to provide financial stability and advocating medically for myself. I leaned toward my doctor for support who in turn stated that there is no way to prove that the health challenges are related to the CLL, therefore "no qualifier for ADA".

In addition, I found that there is no accommodation for disability in the law at that time to qualifying a person based on having Chronic Lymphocytic Leukemia; Rather, the accommodation is to a doctor defining debilitating conditions and relating them to the CLL.

I also found that it is common to list the cause of death for a person with CLL who passed away as something other than CLL, such as heart failure, renal failure, etc. Which in my opinion is often a result of the CLL. I believe that this inaccurate listing results in lawmakers having insufficient data to find inclusion for CLL disability hardships with regard to ADA.

Case in Point, "The only immediate disability support that will be given to those with CLL is given to those who get immediately disabled".

There is no cookie cutter solution for CLL'ers at this time because of the complex dynamics of the disease, the individual, the medical community and their regulators. This disease is a challenge even with the best circumstances it requires much.

Be encouraged though, there is an overwhelming amount of information and supportive resources available for CLL patients. There are many documented individual successes as well, and I intend to be one of them.

I agree with the Patient Power motto “Knowledge Can Be the Best Medicine”

Good Fortune and Circumstance to All,

JM

[lankisterguy Volunteer]

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.

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Then that specialty pharmacy should also help you apply for copay assistance through one of these: rxassist.org/patients/res-c...

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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.

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Use this link to find programs that assist with medication Co-pays

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

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"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":

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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/

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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

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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

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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...

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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

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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

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Len

[Glasstop]

Thank you so much!