Medicare Part D

[Goopteal]

I am in the U.S. and in the process of signing up for Medicare Part D. At the moment, my CLL & AIHA are stable (thank you, Jesus). My specialist has said my drug plan would be more Rituximab infusions if necessary, and possibly Rituximab and Veneticlax. The problem is that the oral med V does not appear to be covered under Part D. My agent looked to source it in Canada, but it is still very expensive. What have others done for coverage?

[cajunjeff]

Medicare part D paid for venetoclax when I was on it. I have part D through silver script.

CLL Treatments Covered by Medicare Part D

Prescription medicines in the form of a pill taken by mouth like venetoclax and BTK inhibitors (acalabrutinib, zanubrutinib, ibrutinib, pirtobrutinib) are not covered by Medicare Parts A or B. They are, however, included in Medicare Part D. You can join a separate Medicare drug plan to get Part D coverage.

healthtree.org/cll/guides/c...

[Goopteal in reply to cajunjeff]

Thank you, Jeff

[neurodervish]

Many of the Medicare Part D plans include Venetoclax (called Venclexta on the Medicare website). The trick is selecting and signing up for the right plan. The problem is that you can only change drug plans once a year during the Open Enrollment Period from October 15 to December 7, with changes taking effect on January 1). Unless you're new to Medicare, which also allows you a window of time to choose a drug plan. If you go to medicare.gov/plan-compare and enter your zip code, it lets you search for drug plans by each drug. I was able to find Venclexta on a plan with Humana.

[Goopteal in reply to neurodervish]

Thank you, I do not know why my agent could not find it.

You are correct that it is tricky — especially for us. The agent asked when might I need the drugs. Who knows? That’s the “fun” of W & W — especially while monitoring AIHA. I try to enjoy the day and not worry about tomorrow, but some issues, such as this one, need some planning.

[neurodervish in reply to Goopteal]

Unfortunately, we need to think ahead with CLL. I confess, I'm confused about the "agent." Did you go thru a Medicare Advantage plan or something? I've never dealt with an agent. I was worried about my CLL being treated by HMO-like gatekeepers, so I just signed up directly for Parts A & B online. After that, I checked the Part D plans for the drugs I thought I'd need and signed up online for that too. Your agent probably didn't check "Venclexta" on the Part D search pg. When I tried to find Venetoclax, it offered Venclexta. So I looked that up and it was the Medicare name for it. I'm not a medical person, but it wasn't hard to figure out. 🙂

[SeaChanty in reply to Goopteal]

It could that it is not in the regular formulatory but will be covered once the Dr prescribes it and it goes through the insurance process.

[Goopteal in reply to SeaChanty]

Thank you

[akirsch973]

Given that you have CLL and AIHA, do not sign up for a Medicare Advantage plan. Although the cost is a lot less than traditional Medicare, coverage is quite different. I am taking both Brukinsa and Venclexta through a Cigna Part D plan and both are covered by the plan.

Separately and as an example, I have a friend with macular degeneration who has Medicare Advantage. There are several new intraocular treatments for the condition but because he has Medicare Advantage, he first had to undergo 4 monthly injections with original Avastin (which did nothing and was approved about 20 years ago) before being approved for one of the new treatments by his insurance company. Thankfully, the new treatment is starting to work. If he had a prescription plan through original Medicare, he could have initially been treated with one of the new medications.

[Goopteal in reply to akirsch973]

Thank you so much for your response. My mother had a horrible experience when she had a stroke on Medicare Advantage, and my specialist warned me it is not for cancer patients.

[ncosto]

I worked for a few years for an insurance agent who specializes in Medicare Supplemental and Drug plans. I recommend you work with a reputable agent who has the software and the experience to run all of your drugs through a template that will provide results for the best plan(s) to cover your current or known Future drugs. You can do this yourself on the Medicare.gov site, but an agent has the experience and knowledge to counsel you. The agents get compensated by the insurance carriers, so you do not pay for their services.

[Goopteal in reply to ncosto]

Thank you for your help.

[Thursdaymorning]

I have been on Calquence since 2021. I'm 71 and have a Medicare advantage plan, however, my cancer center(Kansas University Cancer Center) and the speciality Rx applied for a grant thru PAN..PT assistance network...the copay was K3000/Mo and the grant pays it. Are there any such programs available to help you?

[Goopteal in reply to Thursdaymorning]

Thank you, hopefully I will get the correct Plan D to cover it.

[BeckyLUSA]

I went through an insurance agent that specialized in Medicare. They are paid by whichever insurance company you end up choosing. My agent showed me 3 different companies and I chose the one that fit me best. She did encourage me to steer clear of any advantage type plans and go with a full blown supplement and a reputable drug coverage company. Best advice I have ever received. Venetoclax was shown as being covered. I have NEVER regretted going with the supplement!

[Goopteal in reply to BeckyLUSA]

Thank you — yes, my specialist calls it MedicareDisadvantage.

[BeckyLUSA in reply to Goopteal]

Oh, that’s a good one. Have to remember it!

[Cornhusker]

I called a few insurance plans and found that, at least for me, AARP's plan offered the best coverage for CLL meds without breaking the bank. I'm still on W&W so haven't had to use it yet.

[Goopteal in reply to Cornhusker]

Thank you, I have heard good things about AARP’s plan.

[julius_the_cat]

TLDR; The maximum average monthly cost for venetoclax for any Part D Prescription Drug plan is $166/month regardless of formulary coverage. Next year we'll probably skip the "formulary exception" process, since it didn't affect the cost for us.

The 2025 out of pocket cap is $2000 per year for all Part D Prescription Drug plans with an option to pay in monthly installments. $2000 is the maximum patient cost for the year. An installment plan must be offered and therefore the cost could be as low as $166/month ($2000/12). "Catastrophic coverage" pays all costs greater than $2000.

Medicare navigators use a supplied website to look up medication names and may have limited understanding of drug naming conventions in my experience. In general, plans are required to cover at least 1 medication in each class of drugs, but I have seen gaps and lack of coverage for some specialty meds.

Late in the calendar year prior to the coverage year, the plan will release online the covered formulary. If venetoclax is not listed, the the next step is to submit a "formulary exception" form (which is provided by the plan) and completed in cooperation with your physician.

We went through this process for 1 of our meds which was granted an exception and the plan did pay for part of the 1st month prescription. However, the eligible patient pay portion was still greater than $2000, so there was no cost to us after January. Since venetoclax may cost $12,000 per month, likely the result would the same.

[CycleWonder]

Another option is to join a trial during which it’s possible your CLL medication could be provided by the trial sponsor.

[Pin57]

We have dual full insurance coverage - Medicare Parts ABnD (no Medicare advantage stay clear of those!) plus we have United Healthcare (through GEHA). I’m on W&W and like CajunJeff stated, Part D via Silver Scripts will cover you well if (or when) you need the costly CLL drugs.

I noted the dual full insurance as my wife went thru 4 years of stage 4 breast cancer costly treatments (14 different treatments she had) n countless expensive scans, lab tests , surgeries n I could go on n on. She unfortunately passed away last August. Crush-city. Wish on no one to get the cancer she had.

I bring that sad story up to drive home a key healthcare financial point that because we had the dual full insurances noted, my wife’s over $2M (“list” costs) of cancer related medical costs were nearly all totally covered. Out of pocket expenses were minimal n I have literally hundreds of EOBs that stated $0 dollars owed for medical expenses to prove that point.

Wish the federal government would offer to the public the same health insurance plans (and significantly lower premium costs) they offer federal employees (n politicians) like they did me. Waaaay best cancer coverage on earth and proof is personal, we lived it and benefited greatly from having that dual full (n affordable) insurance.

So if you really want the best healthcare coverage imaginable…. It’s out there… but ironically GIVEN to federal workers (and federal politicians). In today’s DOGE environment, I’ve stopped recommending to my friends that their kids should apply for a federal job just because of the awesome bennies like it’s healthcare coverage

Though for CLL … you’ll do fine just getting Part D coverage. Be sure to compare what Part D vendor you pick, not all are the same … Part D, thru Silver Scripts, covers CLL drugs well. Recommend that route.

Good luck and you are a very wise person to plan ahead on this topic!

[Goopteal in reply to Pin57]

Thank you so much for your reply. I am very sorry for your loss. Cancer is so prevalent and evil. It had to have been difficult with two cancer diagnoses. It sounds like she endured a lot and fought bravely. I am glad that you did not have the extra salt in the wounds of medical debt.