I just started taking Acalabrutinib / Calquence one week ago and the $2500 per month that my Medicare Part D does not pay is being covered by assistance from the LLS. And my 2020 tax return AGI Gross was well above what I thought any of the charitable agencies would approve.
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It was incredibly easy to obtain the coverage- since the NY Presbyterian Queens Pharmacy did all the work, and I didn't even know which agency was providing it until the attached card arrived today.
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In 2015 ONCO-360 arranged my Ibrutinib copay with PAN (Patient Assistance Network). And since 2016, Genentech provided my Venetoclax at no cost when my previous Part D insurance would not cover Venclexta "Off Label"
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So if you are facing a copay, ask for help actively and don't be shy.
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Len
Written by
lankisterguy
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It's great to know of all the possible options of assistance that exist out there. I have been a lucky recipient of assistance from PAN Foundation. Thank you for sharing good news!
Thank you for all of this information & hope all is well Len~
Thank you, Len, for sharing this information. CLL is stressful enough without having to worry how the treatment will be paid. You've been a fabulous volunteer btw and wonderful support. Thank you for all that you do.Wishing you the best with the Acalabrutinib / Calquence treatment.
Cost was my first question after recently becoming eligible for Medicare. The oncology pharmacist at Stanford contacted an organization, and within 15 minutes, I was covered for $8,000 for Venetoclax.
I also receive the LLS Co-Pay assistance. My pharmacy applied for it without me even knowing. I second everyone else's advice - make sure that you have a good specialty pharmacy and don't be shy about asking them to look for help with your expenses.
Great information, Len, as I may be headed for Venetoclax, having been told at my last NIH trial visit in December that I appear to be relapsing after 5 years on acala. Rare is the one who can afford these copays. The charges for these “your-money-or-your-life” drugs continues to provide fodder for philosophical discussion. But for another time and place. I surely hope the acala does you a good turn. Hang tight! Bud
I started Calquence one week ago. I had gone to their website prior and called the number for the copay assistance (AstraZeneca) and applied over the telephone. One of the qualifications was you must have commercial insurance through an employer or a your own plan, if you are on Medicare you cannot be in the program. there were no income requirements. I was approved and they pay up to $26,000 a year in co-pays. They gave me a series of numbers that I had to give to my specialty pharmacy and they bill my insurance first then AstraZeneca. It is an amazing program. Hope this info may help someone 💪🏼
you are so fortunate! I have not been able to get any assistance. I am actually out of my Calquence right now because I just can’t pay a co-pay of 3300 now and then again in January. I got on Medicare in November. I will pay the co-pay in January and then I will still have to pay 900 a month. I am so happy for you!
Have you contacted the drug company directly, to see if you qualify for free drug? In my case, the doctor got Prior Authorization approval from my insurance company, and the drug company used that plus a prescription to their designated specialty pharmacy, to ship the medicine to me at no cost. I do have to get refills 2-3 weeks early. It isn't run through Medicare, and has no copay or affects the donut hole.
I have found that my CLL expert doctor's staff, the specialty pharmacy that sends out the Calquence / Ibrutinib / Venetoclax and the LLS.org all have been helpful to me in the past. In each case it was a different one of those three that found a copay for me. So if you haven't contacted all of them, I suggest you try all three to see who can help.
I also received assistance from PAN, requested by liaison working in the Oncology office. But it’s good to know there are other places that can help. If I need to go ogre Calquence or the formulary changes. These medicines are incredibly expensive.
One snag I ran into for my upcoming treatment was the LLS calculation of income. The LLS site is not at all clear about this. I called them, and was told that they use Gross Annual Income (not Adjusted Gross Income), and wanted the amount from a previous tax year (2021) when I was still working. But it sounded like the person on the phone was shooting from the hip.
Several years back, I had to provide one copy of my Tax return to PAN showing the Gross Income- line #20 and was told that Adjusted Gross Income on line #30 was not to be used. For a few years after that they accepted my verbal assertion of the amount.
When I recently contacted LLS I told them I was over the historical 5X the poverty income limit for my address, and they found a different source that did not have an income limit.
I have usually found them to be cooperative and creative when I was transparent and honest with them.
May I ask what source you found that did not have an income level? Venetoclax costs me $800.00 per month after I start on catastrophic coverage. We are retired, on Medicare and have BC supplement and RX. We are just over the income level to receive assistance.
As I said above healthunlocked.com/cllsuppo... : I have found that my CLL expert doctor's staff, the specialty pharmacy that sends out the Calquence / Ibrutinib / Venetoclax and the LLS.org all have been helpful to me in the past. In each case it was a different one of those three that found a copay for me. So if you haven't contacted all of them, I suggest you try all three to see who can help.
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