I am so grateful for the many medical advances that we all benefit from. I also realize there is a cost to be paid for that. However, I am just very concerned about the cost of some of these drugs! I do not know what some people do to keep going, do you have to loose all your assets that took a lifetime of labor to build? We are not wealthy people but it would be disastrous to loose our home! My husband informed me the other day that the cost of Ibrance is now over $500 PER PILL, $12,000 PER MONTH!!!!! We are still covered under his health insurance through his employer, and after the high deductible is met the plan covers the cost of the drug at 100%. Our out of pocket is made substantially less because of a co-pay assistance program through the pharmaceutical company. If I had Medicare only I would not benefit from this program because Medicare law does not allow this type of discount. I understand the need for regulations to prevent Medicare fraud but this just does not make sense! I know the day is coming when we no longer have private commercial insurance when my husband retires. Medicare prescription coverage would still mean a huge out of pocket expense for us because of the tier this drug is in.
For those of you who have Medicare coverage only (no private insurance) what are you doing about this huge expense? I'm thinking of setting up an appointment with a financial counselor at the hospital to see what happens when we loose our private insurance. I would be very interested in hearing from some of you who are experiencing similar problems.
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Sister3nkc
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Indeed! My sister just lost her job of 18 years which at 67 she was keeping for the health ins. Were she in my situation (4th timer, now MBC on Faslodex, Ibrance and Xgeva) she would be totally wiped out in less than 18 months. The costs stagger the mind. What about those that financially cannot even begin treatment?!
Its totally not acceptable! Why can pharmaceutical companies give assistance to privately insured patients but not Medicare only patients? Its so out of whack!
As a Medicare patient, even with Medicare part D insurance, I have only one choice, to run through my savings until my income is low enough to qualify for financial assistance.
I am in Medicare and I am using exact medication IBRANCE faslodex and xgeva. I pay something around $2468 for IBRANCE and I haven’t received bills for the other 2! I don’t know for how long I will be able to pay for these medication from my 401k. It is too much! I feel like I am paying to Pharmaceutical companies in order to be able to live my miserable life!
I work mainly for the insurance. On Ibrance and Faslodex. The stress of figuring out retirement is pretty bad . Now my husband is out of work. I’m 65. I’m getting tired. I try not to complain, but I’d like a few years of peace. I feel so badly for people who are scraping by to afford treatments. I’m angry at our government, the theft of services and mismanagement of benefits programs. No one in this country should have to fight cancer and worry about not getting the right drugs to keep going. I know the expense of keeping me alive doesn’t make sense to the actuaries. Ugh. That’s why I meditate, drink kale juice and keep going until I can’t. I try not to get discouraged or bitter. It takes a lot of psychic effort.
Yes Sister3nkc, there are. It’s the greed and mismanagement that really gets me. I don’t mind drug companies recouping research costs and making a profit, but how rich does the CEO have to be? Same with insurance companies. And the politicians who are paid off and fail in their obligation to protect us are despicable. The people who sell pink ribbon products and don’t give a dime for research...there are good people. Just not enough of them.
Hello, Sister3nkc! I am sorry about what you're going through. I, too, am on Ibrance, in combination with Letrozole, and my Ibrance pills cost over $1K each, according to the benefits statements I've seen from my employer's insurance company.
Given that I will be turning 65 this spring, I met with a licensed Medicare broker last summer about choosing a supplemental plan. It would be $10K/year, and I seem to recall that I would still have a high deductible, but that is nothing compared to being responsible for $300K of costs per year for just one drug, which is not possible.
I, too, however, have decided that my best bet is simply to keep working until I can't. Thankfully, I am still in good shape.
My situation exactly except I turned 65. Most of us can barely scrape together the over 10k a year for the drug. And that doesn’t include the cost of the drug insurance.
I totally understand, which is why I will have to keep working until I can't. My only point is that it is better to spend $10K/year, if you can afford it, than it is to spend $300K/year and lose your house and life savings in one shot.
I take Ibrance and Ketrozole and am on Medicare. I have also bought a supplement insurance, AARP - United Health Care, and Humana for my prescription drugs. Humana has a specialty pharmacy called Briova that my Ibrance comes from. They have worked with me to get a grant that covered my copays for the first seven months. It just ran out and she found me another grant that will help with this year. My doctor’s financial lady is working on getting assistance from Phiser when no grants are out there. Your doctor should be able to help you along in all of this.
If your ONLY insurance coverage is Medicare you cannot get the copay assistance. You may qualify for limited financial assistance ONLY IF your income is at 400% of the poverty level.
Thanks for the valuable info...My question is re: the 400% poverty income cutoff...
Do you know if this is gross income or AGI, i.e. after deductions? Thanks to the wonderful (sarcasm) new tax plan, medical costs only in excess of 10% of income can now be deducted. Last year, it was 7.5%. I remember when it was 2%. But now corporate jets are deductible, so maybe that makes us feel better?
Poverty level for a 2 person household is $16k. So $64k is the 400% threshold you describe.
Do you know if this calculation ignores assets, i.e. you can have savings/investments/401k, but as long as you take only $64k as income you're okay?
If this is the case, I can see some ways to possibly make this work, e.g.
- prior to going on medicare, use assets to pay off mortgage to reduce expenses/reduce the need to draw down/take income after going on medicare;
- make any other significant purchases, e.g. car;
- buy a vacation property or buy into one of those clubs for traveling;
- gift money to loved ones who can then help with expenses; etc.
In other words, use current assets to prepay/eliminate future expenses, to be able to manage within the 400%/$64k?
Bear in mind that, since we have metastatic cancer, we don't have to pay the 10% penalty on any early withdrawals from retirement savings....but of course we'll still pay a higher marginal rate if we have other income at that time.
Also, it's possible that some people can benefit from turning some expenses into business expenses, maybe even a business loss, which reduces adjusted gross income. I have a couple of LLC's that generate losses, but provide me value in other ways, e.g. I have a vacation rental property that I manage at a modest loss, but the guests pay down the mortgage -- so my asset is growing -- and I am able to use the property often and deduct many related expenses.
I like the way you think! I've had some of those same thoughts....
That 400% figure could be less, thats what one organization required to even consider your application for assistance.
It is my understanding that Medicare takes ALL of your worth into account, including (and especially) your real estate, whether it is your primary residence or not. They also look back up to 5 years at your financial expenditures and activity. I'm sure all the fraud that has happened is the reason for so many rules.
We are looking into it further. We really don't have anything other than our home. It is a very sad thing to think that in order to be provided with life saving healthcare we will be forced to sell our home after a lifetime of living a good clean life and doing the right thing. Illegal immigrants are pouring into this country and the services they receive for free are draining the wealth out of this nation. I'm a registered nurse and have seen the abuse of our resources for years. Yet so many Americans, here legally that have always contributed to the system have to choose between life sustaining medical care or loosing their modest home. Don't mean to get off track or be too melancholy, but so many hard working Americans are suffering and so many other Americans really don't have a clue about it.
This is horrible! I am not on medicare and have private insurance. Maybe your hospital can direct you to someone or they have services there to help. Keep asking around. Please contact Pfeizer by email to have them supplement your Ibrance payment. I'm sure you would qualify. They are paying 100% for me. Good luck, and keep searching for services.
Mimigram, is you Kaiser insurance through your or your spouses employer? In 4 years I've never encountered a Medicare patient, ON ANY SUPPLEMENT plan, paying as little as $51/month!
I'm on Medicare and get co-insurance plus a drug plan and it all costs me about $350/mo. I'm not on Ibrance -- I'm on Faslodex, Xgeva and Armidex, which has been working very well for me. I get 3 sets of scans (bone and CT) per year which are covered by insurance. I'm very greatful for Medicare.
Ibrance and faslodex shots were covered when my husband retired and I went on medicare. I'm now on xeloda which is covered ubder part b. That was scarry because it is not on the list for part d drug coverage but because it used to be iv at facility that is how they bill as like out patient. CVS kept charging me $160 monthly and I fought with them and called and finally they refunded the money.
If Ibrance is really expensive for anyone, I'd suggest having a very frank conversation with your onc about whether it is really worth it. I have a bias, for a couple of reasons. I was diagnosed with MBC -denovo bone mets in 3/2004 , way before drugs like Ibrance were available. I got 4 years and 9 months from Letrozole, along with Zometa for the bones. Then I got over 9 years from Faslodex. I was put on Ibrance for 10 cycles in year 7 of that but did not tolerate it well and ended up with what looks like permanent lung damage. A good friend with mets who also got a long time from Letrozole and then Faslodex, was put on Afinitor shortly after it became FDA approved and died from lung complications from the Afinitor and the fact that her onc did not realize that was causing the problems. So choosing to forgo those meds due to cost or concern about side effects seems reasonable to me. That said, there are alot of avenues out there for help with co pays. I have heard good things about AARP medicare supplement insurance. I have a United Health Care supplemental policy through my final employer and my husband is covered, too. I have very low co pays when I have one--generally have not paid anything for scans and most lab work. The states vary alot in how they handle Medicaid and what income levels need to be verified.
Well, I was originally diagnosed in 2000 2ith Stage 1. Went through chemotherapy, multiple surgeries, radiation therapy and was hospitalized for a severe MRSA infection. Made it through all of that and was told I was "cured". Fast forward 15 years and diagnosed with stage 4 with mets to left lung. My entire pleural membrane was studded with tumors and I had thick nodules in the base if my left lung. I've been on Ibrance/letrozole for 4 years. I get regular scans and they show NED. My tumor markers have dropped very low and stay in the 20-30's.
WHY WOULD I STOP TAKING WHAT IS KEEPING ME ALIVE.
I am a registered nurse and have to say such a suggestion is potentially irresponsible. Not everyones situation or reaction/response to a treatment is the same.
I am sorry for your lung damage. That is an adverse effect I have not heard of before.
If this therapy fails I will have to consider the next step. But as long as I have any choice in the matter stopping what is keeping me alive is not something I could even consider.
Go to the Ibrance web site. Sign up for the 0 copay coupon. Without it I would pay $35 copay.
I am Lucky enough to have Medicare and my husband has insurance for us both in retirement. But I call all drug companies to see if they can help with these expensive drugs. Two of my husband drug copay is $80 every three months. No coupon on them so I will take all the help I can get.
I currently receive the Pfizer copay assistance. My question was really about what those with Medicare only coverage were doing about the high cost of Ibrance. My husband "could" retire later this year but when we loose his insurance coverage through his employer we will then be Medicare only also. At this time we estimate the Ibrance will cost us about $10,000/year. There is no assistance available for Medicare only persons, we middle class. If you're living at poverty level there is assistance. We would have to use 1/2 of our assets before we could qualify for any assistance. For us, basically, that's loosing our home. We've both worked and paid taxes since we were teenagers. Thought we had a very solid retirement plan in place. Who could ever predict that the cost of one medication would blow your entire plan to pieces. How can anyone afford that cost on a fixed income? I just keep hoping that after Ibrance has been out long enough the cost will drop. Instead what we're seeing is the cost keeps going up. I've researched it extensively, unless something changes we are screwed.
I live in Canada and several of our provinces cover the cost of Ibrance. Nova Scotia does not unless you fill in a lot of paperwork with your doctor to get special allowance to have it covered. Ibrance costs $7000 per month here but my husband has health coverage from his present job and his veterans health insurance so I pay nothing. If I was using an in chemo it would be 100% covered. Being penalized for taking an oral drug is not fair.
As with many other drugs, you pay less in Canada than we do here in USA. 😥
WOW! and I though here in South Africa we had a problem. I have just changed my medical aid scheme plan from Core (which was hospital coverage only with the option for special cases such as oncology at what they call Prescribed Minimum benefit (PMB) levels. What this means is the medical scheme has a formulary of drugs approved (on cost as much as effectiveness I fear) for that level and Ibrance and other C4/6 inhibitor drugs were not on the formulary so I never had them. On the new plan the formulary is much larger and the medication and treatment is NOT hampered by the PMB rules so it will be interesting to see what I can have in terms of medication.
However, the costs of the drugs you quote do affect us too to some extent - I believe Ibrance, (it may be available on other medical aid schemes) is some R40000 a month - far more that I ever earned!
I wish there were some way to reel in the drug companies as I get the feeling they have the likes of us by the short and curlies - and so we pay to stay alive
I applied to Pfizer for assistance and I now receive my Ibrance for free! I am a widow living on a very fixed income, but if I had to pay the $2300 copayment I was assessed, I couldn't be on this drug! The price of Ibrance is about $20,000 a month!! Tell me who can afford that?? Something does need to be done about these drug prices! Don't know where to start!
Talk to the social worker at your cancer care center they can get grants through the cancer care network or the hospital foundations to pay for treatments
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