Hello all. This is my first posting, but I have been following the daily updates and I am very thankful that there is a forum where I can possibly get answers. To set the stage my blood count was showing signs of something was not right about 3 years ago, and it wasn’t until Oct 2017 that I was diagnosed with CLL. My FISH test was negative for all deletions. My ALC has been steadily going up and about doubling up in less than six month span. My ALC is about 43K now and I expect to begin treatment in about a year or so. My CT showed normal organ sizes except for the spleen, around 15 cm, with very little B symptoms if any, except for what your mind suggests. There were few one inch or less enlarged lymph nodes, but nothing to worry about. In preparation for future treatment, I am trying to prepare for the financial burden if I am to go on Ibrutinib. I have BCBS standard option, the federal plan. I Called BCBS and the providers and no one could tell me what would the out of pocket cost be once I start treatment??
Also, are there folks who have had Folliculitis in conjunction its their CLL?? And how were you able to keep it under control.
many thanks in advance.
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Bowie1957
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Have you looked at your drug formulary for this provider? most of the time they will tell you the co-pay category. also it will tell you if it needs prior approval
First, thank you for your response. The answer is yes, but I have not gotten any answer. Since I have not begun the treatment, the provider will not know what code to use and the cost data is not readily available.
as a retired retail pharmacist i have a way you can find out but you will need your doctors co-operation. get a script and ask a pharmacy to process it. then tell them to cancel the rx after they tell you the copay. a pharmacy probably does this at least 20 times a day for customers who then say the co=pay is too high and don't want the rx. it's also possible it will be rejected then will require prior approval-thats a different issue. have you actually looked at the formulary yourself online? usually specialty drugs are a percentage co=pay.
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 insurance and send you the drugs by FedEx each month.
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For patients under 65 and not on Medicare the rules are different and many can get copay assistance directly from the drug company - the 4 specialty pharmacies know how to navigate those.
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For people on Medicare or will be soon, the drug companies are prohibited from reducing costs, but there is a "work around". As long as your gross income 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...
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If the specialty pharmacy does not help, then contact the LLS and ask them to assist you
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.
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 (888) 999-6743 or email patientinfo@nmdp.org.
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.
as for the folliculitis, I recommend a safety razor with Astra blades. Use a badger hair brush and a shave cream that doesn't have all the additives (I like the Art of Shaving). I used to get painful PFB, but now just the occasional small ingrown.
Hi Bowie, I am in a trial with Ibrutinib/Venetoclax and I also have Medicare and BCBS federal. I was scared to death about what our out of pocket costs would be for the Ibrutinib although the trial provided the Venetoclax for free. The doctor had to get approval and I was approved for a 2 year period (the length of the trial) and my out of pocket costs for Ibrutinib is only $10/month. I can't tell you how relieved I was but I can't say what will happen when my 'approval' runs out which will be sometime this summer. But I looked on the BCBS pharmacy web page (which is really not BCBS but Caremark) and they have Ibrutinib listed as a Tier 3 drug. My husband takes a Tier 3 drug and if we buy it locally it is $268/month but when he runs out of it next time I'm going to see what the cost would be if I ordered through Caremark. I don't know if this helps or not but that has been my experience.
Actually they have as tier 4 specialty drug, and they only cover 70%and patient responsibility is 30% of the cost. That is scary, but it seems as one if the options. I am not retired yet, and still don’t have medicare. I am doing my planning, possibly looking at additional policy coverage. I may still have 6 to 12 months before I begin treatment.
You all have been awesome, thank you for the info and you
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Anyone with AF got any experience with taking either Zanubrutinib or R&V
Just diagnosed. Pretty confused
ABSOLUTE LYMPHOCYTE COUNT 
Radiation treatment for lymph node in neck
