Stage 4 with medicare b and d, and aarp plan f

Artista964

Just curious. How much do you pay for stage 4 pills like ibrance and such widely used pills?I have medicare b and d. And aarp supp plan f. I know iv is covered in full with my insurances but what about chemo pills. Do some bag the pills due to drug copays even with my plans and choose iv everything?

Thanks!

WinningSoFar

My Xeloda (pills) are covered under Medicare Part B. And my AARP supplemental policy (plan F, I think) pays for the rest of it. I wonder if Medicare has a list of oral chemo drugs that they cover under Part B.

time-for-a-cure

i will be retiring within the next year, and am on Ibrance and Letrozole, am wondering what type of supplement to get to get the most coverage for my drugs. Any suggestions

ChiSandy

I'm a 3-year Stage IA survivor on Medicare, with BCBS Plan F and a Humana Enhanced Part D supplements. I have thrown my back out three times in the past two months (used to be once every year or two). My MO brushes it off as musculoskeletal (based on a 2-yr-old x-ray showing arthritis); but I have read too many posts here and on other bc forums by women who had mild intermittent backaches and normal X-rays but insisted on MRI or PET scans that revealed spine & pelvic mets.

I'm terrified of the cost of Stage IV oral treatment. We have a decent amount of money put aside for retirement (and my DH grouses that because I'm retired and our son is sporadically employed--as are many millennials in today's "gig economy" he will have to work past age 70, probably the rest of his life), but even with Humana PartD, Ibrance is about $6K/mo. until out of the "donut hole" (GoodRx would be more expensive); and Verzenio isn't even covered--with GoodRx, it too is $6K/mo. I fear that at $72K/year for one of those two meds alone, if we want to be able to help support our son (who, due to his BFA in drama and his dyspraxia, has no marketable skills--or ability to learn them--other than acting & writing) and leave him anything after we die, I will have to decide at some point that we might not be able to afford for me to stay alive, and therefore I should hurry up & die so that he can have enough to live on.

The irony is that if we were poor, Patient Assistance programs would cover the entire cost. If I were under 65 and still on commercial insurance, mfr. co-pay cards would also bring the cost down to zero. If we were truly wealthy, coverage or price wouldn't be a concern. I know I sound like a spoiled brat, since we are upper-middle-class, but this is just another example of the middle class being screwed over. If we "spend down" enough, I probably wouldn't live long enough to get there, and I would be hanging our son out to dry.

Anyone else here on Medicare, neither rich nor poor, and still able to afford Ibrance or Verzenio? How do you do it?

Spookiesmom

Open enrollment starts Oct 1. Suggest checking into different plans, some may be better for you. I also have Humana, far less income than you, they don’t want to pay for my insulin pump. I’m going to be looking.

Sara536

ChiSandy,

Unfortunately, I’m afraid there are many who’s minds stray to lugubrious thoughts about how to survive the costs (or not). Or how to provide for our children.

Artista964

I wonder if it's too much to pay if you can just do iv, forget the pills..

ChiSandy

Thing is, they’re two different kinds of treatments—traditional IV chemo is cytotoxic, and won’t kill slowly-growing ER+ cells, just one’s healthy fast-growing cells. These two oral drugs use an enzymatic pathway to target proteins in ER+/HER2- cells. They are more effective than cytotoxic chemo.

Humana Enhanced PartD is actually the most generous of the supplements

LoriCA

ChiSandy you have brought up my biggest insurance concern. As Stage IV I qualify for SSDI and then would automatically be put on Medicare after two years. It would be great to take advantage of Medicare now that I'm not working and we're down one income, but I haven't applied for the benefits I'm entitled to because I know I could never afford the co-pay for my H&P infusions without the manufacturer's co-pay assistance program and I don't qualify for low-income grants or assistance. Every way I look at it (with my limited knowledge of how Medicare works), it seems much cheaper in the long run for me to pay $20,000 per year for private insurance (for 2 of us) than to go on Medicare. Currently my H&P is billed at $10,000 every 3 weeks with a 20% co-pay, and Genentech covers my co-pay up to $25,000 per year. I hit my annual out-of-pocket max by April 1 this year, with a good percentage of it covered by Genentech, and haven't had to pay a dime (beyond premiums) for any of my medical care or meds since.

I'm throwing this out here because I'm trying to figure out this mess myself - is it possible to have private insurance in addition to Medicare, and in that case I believe the private insurance coverage would come first, or even instead of Medicare, and not be bound by Medicare rules? It's not easy to stomach our every-increasing premiums now that we're down to one income, we may end up cashing out of our house and downsizing, but when I crunch the numbers I can't see how to make Medicare work unless there is something I'm missing. $10,000/year in premiums for private insurance that covers just about everything is a heck of a lot cheaper than free/low cost insurance that comes with a $36,000/year co-pay for just my infusions alone!

Sure hoping that someone tells us that we are both missing something in the equation.

ChiSandy

If you are not yet 65, you could still have private insurance from your employer's plan (provided the group is at least 20 employees), and it would be primary. Medicare would be secondary and you could delay getting Part B until you lose your employee coverage or retire. By law if you continue to work for a company with at least 20 employees, your group insurer can't terminate your coverage just because you turn 65. But you would be paying a penalty for each year after 65 you delay getting Part B, and the penalty increases each year until it reaches 30% of your Part B premium. And once you do retire, the only "commercial" insurance you could have would be your Medigap or Advantage plan. And Federal law prohibits using manufacturer discount coupons or co-pay cards if you are on Medicare, Medicaid or Tricare. (You can still use GoodRx, but you'd still be paying a lot out of pocket). You can opt out of Part D, but as with Part B you would still have to pay an increasing annual penalty for each year you delay after age 65. (Medicare Advantage plans include a form of Part D, but with tighter pharmacy networks and smaller formularies). AFAIK, there are no standalone commercial (i.e., not Fed. subsidized) drug coverage plans you can buy once you're on Medicare.

Before he turned 65, my DH & I were on his office's group plan with United Healthcare. (He owns his own cardiology & internal medicine practice in a blue-collar neighborhood). Unfortunately, the group has only 7 employees (he is "employed" by the professional corporation that is his practice). So because the law allowed it to, United dropped his coverage at 65. He went on Medicare PartB & BCBS Plan F. I remained covered by United under IL state "spousal continuation" law until I too turned 65. By law, Medicare Part B, D and our BCBS Medigap policies are the only insurance we can have--now that I am collecting Social Security (at 67, having had breast cancer, I was leaving too much money on the table by not filing & collecting).

EDIT: My DH came home from work late tonight, and I told him of my fears. He reassured me that statistically I was unlikely to have mets this soon; and when I told him the co-pay cost of Ibrance or the GoodRx price of Verzenio, he hugged me and said "that's what retirement savings are for."

Sara536

If this link doesn't work, just type it in. I'm new at this.

The Secret to Getting a Pharmacy Discount With Medicare

I'm not positive, but I believe that

"manufacturer's copay assistance programs" are treated the same way as the drugstore coupons mentioned in this article.

I had a conversation with AstraZenica a while back about buying Anastrozole directly from them since my insurance will not cover the name brand. They said that I could use their manufacturers assistance program as long as I paid out of pocket. I have not actually tried this yet.

Also, I called Walgreens today and I'm pretty sure the guy I was talking to about this did not have a clear understanding of it. I would not go to Walgreens for this.

proudtospin

maybe i am missing something or maybe my pre retirement insurance was just really bad.....it was as small firm and close to bankrupsy.......but i am stage 4, united health care, using part b, d and aarp plan f, i have found my medical costs to be less than when working. I use walgreens plus some recommended online sources for meds. One is Briova.

My treatment is at sloan kettering and i love them! The pharmacist there told me my insurance was good. Yeah, i went into catestrophic coverage last month so i am reminding myself to fill all scripts.

You are right, the money i was planning to use to travel, well using it differently now honestly my energy would be the pits. for serious travel.

LoriCA

ChiSandy my husband and I are both self-employed, in our 50s and have to buy our insurance on the open market, so none of those laws apply to us yet (I previously had 22 years of salaried corporate employment credited toward my benefits before becoming self-employed). I did find in my research that giving up premium-free Medicare in favor of private insurance requires also giving up social security benefits, so I guess that's my answer to that question.

Proudtospin, I see that you are HER2+, are you currently on Herceptin with or without Perjeta? Since they are IV and not oral, it would be covered under Plan B with a 20% co-pay after deductible is satisfied, which for me would be $2000+ every 3 weeks with no annual limit. If I understand correctly, MediGap Plan F would cover that amount if I were to pay a couple hundred dollars more per month in premiums.

Medicare doesn't allow manufacturer co-pay assistance programs because they are viewed as illegal kickbacks intended to entice doctors into prescribing an over-priced drug instead of a cheaper alternative. Pfizer settled a $24 million lawsuit over it earlier this year. I understand the reasoning, but unfortunately there is no lower-cost/generic alternative to Herceptin.

For oral drugs, I know for a fact that the cost at Costco (purchased without insurance) can be substantially lower than the co-pay with many insurance plans. I've used that trick myself.

Sara536

I think the crime lies in making the acquisition of the drugs we need so incredibly complicated- especially for the very sick, the elderly, and lower income people.

Artista964

good rx is still very pricey for ibrance and xoleda generic. If i go stage iv I'm hosed. Guess you need to be well to do to survive it even with medicare. Very sad.

ChiSandy

I read that Consumer Reports article. It applies to drugstores' own discount programs for commonly used generics--NOT manufacturer co-pay cards or discount coupons for their brand-name drugs. Granted, I was, as a Costco member, able to buy generic topical diclofenac gel, albeit not quite as cheaply as I've paid in Europe for Novartis' Voltaren gel (over-the-counter in the EU!) when Humana wouldn't cover either the generic or Voltaren. But the other "secret" for savings? Income-related mfr. & gov't prescription assistance programs. (If you are wondering if you're eligible for those, probably not--if you have to ask, your income is too high).

Only GoodRX coupons are legal for "bypass-your-insurance" out-of-pocket. No way you can legally use a mfr. discount coupon if you are on Medicare, even if you pay 100% "under the table" out of your own pocket and leave Medicare out of the picture. The fine print on the coupons (and at the bottom of the screen in the TV commercials for those insanely expensive biologicals for not just metastatic cancers but also autoimmune diseases) say that they are not valid for patients on Medicare, Medicaid or Federally-subsidized insurance (e.g., Tricare, Fed. employee ins, plans)--even if you leave Medicare et al out of it. Not simply that they can't be used with Medicare, etc.

The manufacturers can afford to give deep discounts (or even free meds) with these coupons or cards because insurance companies reimburse them (and pharmacies & benefit managers). But Medicare supplement carriers don't reimburse pharma companies or pharmacies--it's a condition of those carriers being allowed to participate and be subsidized by the CMS. I'm not sure, but if caught you could lose your Part D benefits, pay a civil penalty or even be fined. (Haven't dug through the Federal statutes to see if it's actually a crime or "just" a civil violation). Pretty sure I read that in either my Medicare handbook or the annual Humana Part D manual.

Yes, you can always go out-of-pocket for any prescription drug you can afford. But bear in mind that even if the cost doesn't count towards dropping you into the donut hole, once you're already in there, it doesn't count towards pulling you back out into catastrophic coverage, either. (Nasty little gotcha about Part the "magic number" that kicks you into the donut hole includes how much your Part D insurer pays, not just your co-pay; but to climb back out, only your out-of-pocket--for purchases made via your Part D plan--costs count. So if, say, you & InHumana have shelled out >$3750 combined,even if your share was a mere fraction of that, welcome to the donut hole. But no matter how much InHumana pays for drugs you buy while you're in the hole, it's only what you pay via your coverage that counts towards meeting the $5000 threshold for getting back out--and what you pay "under the table" doesn't count. For branded drugs, the donut hole goes away in 2019. But it's still there for generics (albeit your share for generics will be 37% instead of the 44% you currently pay while in the 2018 donut hole).

MuddlingThrough

ChiSandy, thank you and others for this discussion and all the info. I'll have to make some of these decisions in a couple of years if I'm still here. As you said in an earlier post, it may be the best if I go on and die rather than deplete any funds my DH will need to live on for hopefully 30+ more years. (Only speaking for myself, here.) At $6K or more a month just for medicine, it wouldn't take too long to vaporize the savings...and for what? In my case, no cure, and likely only seriously worsening physical condition over time. (Yes, I know that I am not a statistic and so on, and so on...but I also have to be a steely-eyed realist when planning.)

I consider myself fairly smart, but all this about insurance, Medicare, donut holes makes my head hurt! I'm grateful we have fairly good commercial insurance for now and I have time to consider options.

JoE777

just read doughnut hole ending 2019. Don't know the month but getting ready to research that

Artista964

is that a good thing? I never did understand the donut hole thing.

proudtospin

Donut hole ending sounds good but need to wait and see what other things they sneak in!

WinningSoFar

"Proudtospin, I see that you are HER2+, are you currently on Herceptin with or without Perjeta? Since they are IV and not oral, it would be covered under Plan B with a 20% co-pay after deductible is satisfied, which for me would be $2000+ every 3 weeks with no annual limit. If I understand correctly, MediGap Plan F would cover that amount if I were to pay a couple hundred dollars more per month in premiums."

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I just want to add something to this from my experience. I am currently taking Xeloda orally, every three weeks. The "list" price is $2200. The Medicare Approved Amount is about $300 of which Medicare pays 80% or $235.15 and I would be responsible for $60. My supplement (AARP F) pays the $60. This oral drug is treated the same as IV chemos under Part B.

Perhaps some oral drugs are not covered under Part B, but I haven't had that experience yet.

ChiSandy

Hmmm...you may be on to something. Originally, I was prescribed I.V. Zometa for pre-existing osteopenia (DEXAScan was done the day I started rads, 2 months before starting letrozole) because of a "Catch-22:" Neither Part B nor my supplement (BCBS Plan F) would cover Prolia (denosumab is a costly "biologic") because as an injectable in a pre-filled syringe I could theoretically administer it myself and it was therefore a "drug" subject to Part D; but my Part D plan (Humana Enhanced) refused to cover it because Zometa was "good enough" and covered by Part B. Well, it took 5 stabs all over my L hand & arm to find a vein, the Zometa burned like hell with every pulse of the pump, and I spiked a 103F fever and had "faux-flu" and peripheral neuropathy for several days. A few weeks before my next torture session, my MO messaged me that Medicare had changed its criteria for Part B coverage of Prolia: it was now covered for any postmenopausal woman with an ER+ diagnosis, taking an AI, and with either osteopenia or osteoporosis. So maybe they'll do the same with biologics such as Ibrance or Verzenio.

I have a hand therapy appt. Wed. morning and hand surgeon followup appt. later that afternoon. I will make an appt. for the walk-in ortho clinic for in between to try and get a referral for a spinal/pelvic MRI or bone scan. (My MO says that because my calcium and alkaline phos. levels are w/in "normal" range and I have spinal "age-appropriate degenerative changes," bone mets are highly doubtful; but I want to make sure).

proudtospin

i was on activa and aromasin... failed, then onto taxol for about 2 rounds, now on xeloda plus another med for my bones. The xeloda is the most successful for me as my blood counts were through the roof when i started. For now my liver is clear yahoo