On Ibrance. Going on Medicare soon. Any Advice?

[nstonerocks]

I turn 65 soon and will be enrolling in Medicare. I still work full time and have great drug benefits. I’m worried I can never stop working because of cost of Ibrance. Any advice ir info greatly appreciated.

[kit5]

idk about medicare, but i think no one should ever stop working...work is a panacea (in my humble opinion!) as long as it is meaningful work for you... i do know that pfizer helps with the copay if you cannot afford it - you call and ask them for help... so do that before you make any changes!! the big pharma companies have it in their best interest to keep people on the drug because they work and they want the word to get out that their drug works!! so ASK!!! good luck.

[nstonerocks in reply to kit5]

Thanks. I agree that work keeps a person going on many different levels. My job has become stressful. Not enough help, lots of demands that are difficult to meet, and little input into how to make things better. I’d love to step back and cut back. But I have such great insurance it just seems I have to deal with it as long as my health holds up. I’m going to call Medicare/social security and hopefully there will be someone who can help me. Will also call Pfizer. Thanks again.

[kit5 in reply to nstonerocks]

if your work does not give you pleasure- i take back all my advice. get on medicare and QUIT!! i think medicare is pretty comprehensive...

[PickedTheWrongChick]

Pfizer Oncology Together will provide eligible patients with IBRANCE for free through the Pfizer Patient Assistance Program. You may want to look on their website - ibrance.com/financial-assis...

[PJBinMI in reply to PickedTheWrongChick]

It may not apply if one is on Medicare. Something else to ask about.....

[PickedTheWrongChick in reply to PJBinMI]

Look under the On Medicare Or Government Insured? tab.

[worldtravel75 in reply to PickedTheWrongChick]

I am going on medicare next month and because my income is still too high I will be paying 1000.00 per month for my prescription drug coverage through medicare because of Ibrance- the assistance programs only help with commercial insurances. This will drain me of all my remaining funds each month - no help for the middle class - I don't know what to do - put a call in the the social work group at University of Michigan to find out how people survive these high bills and hope they have a solution

[Tap321 in reply to worldtravel75]

This is really sad. Is there not a supplemental drug coverage?

[Hidden in reply to Tap321]

Yes but it will still cost me 10k a year with the best plan.

[Tap321 in reply to Hidden]

That is so not right!!!!

[Hidden in reply to worldtravel75]

I’m in the same boat. So as long as I am healthy enough will work and keep my coverage. My husband just lost his job and ininsure he and my son with work coverage. There isn’t a lot for the middle or what’s called the upper middle class we are cash tax cows. Am looking for more friendly tax states to retire in. Can’t afford NJ or NY.

[BuoyantCat in reply to worldtravel75]

I have received drug assistance through the patient advocate Foundation co pay program. Go to their website and see if they are still taking applications for breast cancer. Also there are llists if other co pay assistance programs

[Bailey3266 in reply to PickedTheWrongChick]

THX for this tip; just casually reading as many posts as I can and WOW this will be a big help as my new as of Jan 1st Insurance requires annual copayment for this medicine of $8,000; so I thank you from bottom of my heart. I just did this (fingers crossed)as I’m changing to CIGNA Insurance and moving to California in June! Any help or advice on either is welcome! Thank you! Good luck all!

[PJBinMI]

I "retired" at 58 not many months after getting the mbc diagnosis and though I have missed some people, I have never regretted my decision to stop working. I was covered by my husband's medical insurance thru his work until I started getting Medicare and then that medical insurance became secondary until he retired. Then we were able to get secondary medical insurance thru my final employer. Not every employer offers supplemental insurance after age 65 but it is something to ask about. Medicare generally covers 80% of most medical bills so finding supplemental insurance is important. I have heard good things about the United Health Care policies that AARP members can buy. That is something to look into. Also, if your income will be very limited once you retire, you might qualify for state programs like Medicaid. SSI is also available for some with low savings and low income. It's wise to look into all this several months before you plan to retire. I'm really fortunate that my husband and I both have secure pensions and that our medical insurance is really good. Unless inflation goes crazy, we should be okay. If I were single, I would probably try to find a good friend or friends to share housing with.

[Tap321 in reply to PJBinMI]

Good advice.

[Epinto]

I was covered under my husbands insurance and had my medical and meds covered. Only paid 25.00 dollars a month for ibrance! Well st 64, I left my job and applied for social security and started receiving my pension benefits. My husbands insurance became secondary and once I turned 65 I received Medicare. Medicare does not pay for ibrance. You will need to join a Medicare part d program for your drugs. It is terribly expensive and unaffordable for the ibrance. It took many phone calls on my part to get help. I called Pfizer and also the patient advocate foundation for assistance. I d

I’d get help. Luckily my husband worked for nyc and I was able to enroll in union benefits that gave me slot of help with this cost. Please make your calls and get your information before u leave your job. I am working part time now and sm grateful to be able to be busy. Good luck.

[nstonerocks in reply to Epinto]

Sounds bad. I will not have insurance thru employer when I “retire”. What do they expect us to do? Guess I don’t make mathematical sense to the actuaries. Thanks

[Partia in reply to nstonerocks]

Me either...I'm scared

[Partia]

I just signed up for Medicare as well,however I am going to be 59. I am scared to death it's not going to be covered. Sorry I can't help you.

[JulSoul]

I just went through this. You have to be very cautious about which supplemental you select. I found out that my plan through AARP plan F will cover Ibrance with a 50$ co pay. There is some paperwork the doctor will have to fill out, but what a relief. Make an appointment with a SHIP counselor at your hospital. They can assist you.Good luck!

[nstonerocks in reply to JulSoul]

Sorry but what does SHIP stand for? Thanks

[JulSoul in reply to nstonerocks]

Senior Health Insurance Programs. Hospitals have them. Call the hospital you go to or look on their web site. You will need to make an appointment. You give them a list of your meds, they type it in and find the best supplemental plans for you. We live in Illinois. I assume they have them everywhere. Best of luck to you. We already have so much on our plates. Sending healing wishes.

[nstonerocks]

Thank you!

[Tam-56]

Nstonerocks

I am retired and on Medicare - I couldn’t afford the 700.00 per month copay so went through Pfizer RX program and getting Ibrance free until December. After that I will reapply and hope I get assistance. You can go to Pfizer Oncology Together website and fill out forms - there is one form that your oncologist fills out.

[Josh308]

Unfortunately, there are two relevant parts to Medicare. Part B pays for doctor care and such things as chemotherapy, i.e., medication administered in a hospital or doctor's office. This includes all IV drugs. Ibrance is taken orally and like all other drugs taken orally is not covered under Part B. As such, it is neither covered by any supplemental Plan. Drugs taken orally are covered by Part D, assuming it is in the insurer's formulary. Ibrance is a Tier 5 drug and not covered. Depending on which Drug Insurer you have you will get a 26-26% discount off of list price. But that's in the thousands of dollars. It is high enough to drive you right through the donut after the first month. After that you pay 5% of list, that is around $500 a month. You're talking big bucks for a year's supply. You can get financial assistance from several different places, including Pfizer. Speak to your oncologist for assistance in navigating this land mine. Plan ahead. Sorry, this is not a good story. Those who do not have a separate drug plan to supplement Medicare's Part D and who do not qualify for financial assistance are looking at a big bill. Unlike private insurance, Medicare is prohibited by law from negotiating with the Drug companies to get a better price. Speak to your Congressman and Senator about this.

[nstonerocks in reply to Josh308]

I didn’t know Medicare can not negotiate with drug companies. Does that make sense? Anyway I have retirement savings but I sure hate to spend it all in a drug. Guess I should be glad the drug exists and is working for me right now. I don’t think I’ll be retiring anytime soon. Thanks.

[PJBinMI in reply to Josh308]

Ibrance was covered under my supplemental plan-United Health Care thru my last employer. I had a $35 per 28 days supple co-pay. Ibrance left me with a difficult lung condition (interstitial lung disease-ILD-like gunk between the air sacs-I get out of breath from leaning over to tie my shoes) and personally I think Ibrance is being given way too much credit without enough info about possible serious side effects being shared.

[Hidden in reply to PJBinMI]

You may be right. Unfortunately we are sort of guinea pigs. 10 years from now it will probably be so much different.

[HopeinNJ]

i have the same fears. I have reduced my hours to 24 a week and pay the supplement for my insurance. It’s so worth it. Afraid to quit work entirely though.

[Garnet131]

I retired at age 68 and was diagnosed last year at age 70 when I was already on Medicare, along with a Humana Part B medical supplement that now costs $180 a month. Also have a spearate Humana policy for the Part D prescription coverage ($20 a month). It does not cover Ibrance. As mentioned by someone else above, my insurance agent runs a check every year to find the best drug coverage based on my current prescriptions, but none cover Ibrance at this time so I've had same policy for 3+ years. When I was diagnosed with mbc last October, oncologist's office/hospital found a grant that covered the $650 monthly Ibrance copay for about 5 months. When that ran out, the specialty pharmacy found another grant for 5 more months. When that one ran out in July, both foundations were out of funds and the social worker at oncologist office helped me apply to Pfizer's Patient Assistance Plan. I was accepted in less than a week to be on their plan through December and have now had 2 deliveries direct from Pfizer. It is definitely nerve-wracking to have to wonder every 5-6 months where the Ibrance funding will come from. I don't look forward to going through it again, but have to trust God's provision.

On the medical side, Medicare and my supplement have covered all costs, including 2 hospitalizations, without any hassles. I have only paid $38 out of pocket to an ER doctor who did not accept Medicare assignment. I was unhappy with that not because of financial reasons, but because he was a jerk of a doctor who was talking about pallative care and hospice when I was in ER before I had even been diagnosed with mbc--very out of line IMHO.

[nstonerocks in reply to Garnet131]

Doctors like that should be researchers or radiologists or some specialty that does not touch or talk to people. You are right, it is nerve wracking to worry where the drug that is saving you is going to come from. Thank you for this information and insight. This is just one more thing to tackle. I go back to work Tuesday. Hope to keep it up until I figure this all out.

[Bishtown]

I am on medicare with AARP United health care as supplement, and Humana for drug coverage. My doctor put me on Ibrance and BriovaRx called me. They are a specialty pharmacy in Humana. The lady worked to find me a grant that will cover my copay for many months ( it is $8000), and then My doctor’s financial lady is working with Phizer to get coverage also. The grants can come out daily, in different amounts. They will work with you.

[Hidden]

Hi Nstonerocks -

Apology up front for the long message...

I stopped working after my metastatic diagnosis and had an option to remain on private insurance or move to medicare. At 54 years old, I was medicare eligible because a metastatic diagnosis pretty much automatically qualifies for disability (SSDI) and therefore medicare.

I did extensive research on benefits for Ibrance on medicare and was stunned to see how bad they are (were? this was 1 or 2 years ago...). I spoke with folks at Medicare about the cost and also with the AARP Medicare Supplement provider at that time (United Healthcare?), who helped me calculate exactly what my out of pocket costs would be for Ibrance specifically and it worked out to about $30,000 per year. I worked in the insurance industry for decades, including marketing primary medical insurance and Medsupp, so I would imagine that I had a better-than-average starting point of knowledge...and even for me it was confusing!

Here's the first problem. When the prescription benefits were first put in by the second Bush administration, part of that deal included our government relinquishing the right to negotiate drug prices for any government sponsored insurance. This shifts a lot of the cost of these expensive drugs to people who are on Medicare. (There are some politicians who are trying to change this...we should support them! )

You might have noticed that, when you get your Ibrance, the starting price (on paper...) varies but is roughly $12,000/month (this probably varies by insurance provider), but you pay like zero, after January. To the federal govt, i.e. medicare, the starting price was about $16,500 (just like the $12,000 is arbitrary, so is the $16,500), so the covered % or amount starts with this very high number and leaves us on the hook for several thousand a month and NOT subject to any sort of out of pocket limits. If I remember correctly, some of this was related to Ibrance being a "Class V (five)" drug...

Here's the other problem. The coupons from Pfizer explicitly exclude people on any government insurance, including medicare. I imagine this is also linked to policies that give the appearance of better government prescription coverage than really exists while ensuring corporate profits at the expense of sick people.

When you first go to the Pfizer website for the coupons you are prompted re: type of insurance, government of private. If you select Medicare, you are informed that there are charities that might help you with costs and Pfizer will help you source those. There is no coupon. If you are unable to find a charity to pay for your life-extending medication, Pfizer has a charitable association that might kick in. I don't know about you but I feel better about accessing benefits from a system into which I paid for decades, i.e. private insurance, medicare..., than looking for charities who might pay for my drugs. Of course when push comes to shove, I'll do what I have to but why is this even necessary?

I've also looked into getting ACA/"Obamacare" coverage, just to compare. When I looked at plans available in my state (Texas...which is one of the worst, I'm sure), the premiums were similar to employee /private coverage (what I'm on now) for the highest level plan..so I think this might actually be a better option for folks who are age eligible.

A couple of additional notes:

1) It was very valuable for me to speak with the AARP provider since they have tools that they can use to calculate exactly what you'll pay, even as your'e just considering signing up.

2) The landscape very well might have changed since I made my inquiries...and there might be programs to help medicare members get extra coverage but I did look for them and did not find them. There are probably financial need-based programs, I don't know, but I certainly hope so...

3) If you're leaving an employer who provides coverage, maybe they can do COBRA coverage for 18 months? The premiums will be high but net-net might still be best?

This is a bit garbled, I'm sorry -- I'm rushing but did want to get this info out there...

Best wishes to you... Lynn

[Hidden in reply to Hidden]

Thanks LynnFish for this detailed explanation of retiring on Ibrance. I did call social security and spoke with a surprisingly personable and knowledgeable rep (not sure why I am so surprised, guess I don’t expect much from the government) who broke it out for me. I live in NJ but that will probably change as it is too expensive to retire here. However, based in NJ now, the best drug plan for me regarding the Ibrance is Express Scripts. I would pay the first months copay $2300 and then fall into a donut hole? Catastrophic care would kick in and I’d pay about $550 a month for Ibrance. So I’d pay about $10K a year for it. A lot of money. It is a disgrace that the fix is in for pharma and insurance companies. How did the govt relinquish the power to negotiate prices? It’s like my cable bill there is no competition so I’m a hostage unless I dump cable altogether. How can I find out which politicians are fighting to change Medicare’s ability to negotiate costs? We all need to support them. My husband is now unemployed so I will be working a while to insure us both. He is 60 and won’t be eligible for Medicare for a while. I’m 65. If I get to live longer, I guess I’ll spend most of it wort. And I’m luckier than a lot of people. Golden years, right!!! Happy Thanksgiving 🦃

[Hidden in reply to Hidden]

Hi Nrocks...

First, my two cents -- If I were you I would not hesitate to look into the "charitable" support for Ibrance offered on Pfizer's site. The backup, if no other "charities " are an option, is Pfizer's foundation. I, for one, think it's appropriate that they pay..

Also, I have consistently found that the folks who work on the phone for Social Security are professional, knowledgeable, and truly helpful. This was my first experience dealing with bureaucrats (outside of DMV) and I, too, have been pleasantly surprised. Made me question the conventional wisdom about the folks who provide government services...they get a bad rap.

I hope you enjoy the holiday... Lynn

[PJBinMI in reply to Hidden]

Lynn, Thanks for sharing your expertise! I absolutely agree with you that we need to be informed voters and support those candidates for the House and Senate who support reining in the drug companies, Rx prices, and making health care affordable to all of us. I am a retired LCSW who worked in health care for years and have alot of experience with advocacy. So like you, I know more than the average patient about the system and I, too, get frustrated and confused at times. I worry about patients who don't have the resources to explore insurance options, treatment options or have a clue what questions they should be asking their doctors! I firmly believe that folks who go online and find resources like Health Unlocked are already a step ahead of many.

[Terilyn12]

I retired (at 55) right after - literally one day after, my diagnosis. I can say this is the only way I can stay on Ibrance as my neutrophil has been between .3 - .6 the entire time. You CAN stay on Ibrance with low wbc, but you have to be really careful.

[Hidden in reply to Terilyn12]

My wbc goes to about 3 and then bounces up to about 6. Been on it a few years. I work as a school nurse and rarely get sick. Go figure.

[Tap321 in reply to Hidden]

That is really good!!!!!

[Tap321 in reply to Terilyn12]

Don’t you have to stop ibrance when it is .5?

[Terilyn12 in reply to Tap321]

I hear that a lot. But, I have labs done weekly to monitor and my Dr keeps me at the 125 dose because my pet scans are showing that it is effective. I am pretty nervous all the time about it - I stay home most of the time and just really careful about germs

[Tap321 in reply to Terilyn12]

It is amazing how some of us can function on very low wbcs and neutrophils!!! 125 is what my oncologist likes best also.

[Hidden]

I take chaga mushroom tincture. Supposed to be great for immune system

[Nursewithcancer]

Pfizer has drug assistance program However those on Medicare and other government plans Are not eligible. However there are some grants that are often available and Pfizer does have a free drug program. These are income based. I would start with checking with Pfizer to see what the income guidelines are for free drug. I think it’s around 80,000. Most of the grants are also around that amount. If you income is going to be low enough you will be ok. Is there a financial counselor at your oncology center that you can talk to? I am a nurse navigator in oncology and see this a lot. Most of my patients on Medicare get grants or free drug. It does take having someone at your pharmacy or cancer center to help with this. Best of luck and I hope you can retire. Again the patient assistance fund will not apply to you on government insurance so make sure they understand your question.

[nstonerocks in reply to Nursewithcancer]

Thanks for responding. I’m not rich but my income will probably not met that criteria for a grant. I was told there is a drug plan that will cover it and my share would be 10k a year. That will hurt in retirement. 😯